That first guy is actually insane, with that disability he is somehow still able to get a job as an accountant just shows how insanely strong willed and determined he is pretty inspiring.
Paul Alexander is a polio survivor who got his PhD in law and became a practicing attorney in an iron lung. People who overcome adversity and challenges are so inspiring for me. I love reading stories of these great feats of human strength.
I have some chronic illnesses, and Dr. Mike saying "the patient is probably the biggest expert in their illness" made me scream out loud. Thank you for validating us!
Man... seeing people like the first poor guy and the fact that he looks happy and he even managed to get an education with his difficult situation really makes you appreciate the luxury of being born a healthy person
@@bamb8s436 i mean he obviously has a serious health issue that makes it incredibly challenging for him to live a normal life, so What do you mean is it unhealthy?
@@bamb8s436 I Mean yeah, Sure he might face challenges with doing some tasks that we take for granted, but he still function in the world, with a job and a family. To me that shows that he is in good health, aside from a few other things. But then again, I am no doctor so take what I say with a grain of salt
I actually smiled when they said that first guy is “pain free”. I guess I felt relieved for him. Maybe it’s human nature to see a person contorted like that and just assume they’re in pain, I’m really really glad he’s not.
I saw a documentary about a child who had a rare disorder where she couldn't feel pain. It was a major problem. She gouged one of her eyes out as a small child, her parents had to check her body every day for wounds, especially her feet. They were terrified what could happen if she developed something serious that they couldn't see, such as appendicitis. The father said that while most people would do anything to take away their child's pain, he would do anything to make her feel pain.
I think that goes to show the point that we may all complain about pain and think it would be awesome without but it serves a very important purpose and things are far worse if you don't feel pain. Just because you may not like the job it has doesn't mean that you shouldn't be happy that it's being done.
Hand-in-hand with that, I frequently don't keep up with the instructions for pain med's given by a doc'... I'd rather feel some discomfort than forget the issue/injury and end up making it worse for myself... from ripping stitches loose to re-breaking bones or otherwise wrecking myself... That's not to suggest that one should be a "damned fool" about it, nor that I'm a glutton for punishment... Only that I AM an adrenaline junky, and I can recognize when I should probably stay at least a little bit uncomfortable (so long as it's not agony) to keep my figurative head in the game. ;o)
But sometimes it's said too much,, where someone wants to direct you to a specialist when its' not needed and just ends up costing a fortune for no reason. There has been plenty of cases of people being directed to a specialist just to get more money out of a patient. I'm sure some doctors get a kick back or some benefit by recommending patients to another doctor, just like some doctors only prescribe a particular brand of a particular medication to a patient based on which ones give them the biggest kickback or profit and not necessary which is most Benicia to customer with both price and function. There is far too many evil and greedy people in this world, can't just blindly trust anyone, doctor or not. As much as i enjoy watching Dr. Mikes videos, most of my family have had absolutely horrible situations with doctors in my life time and have had many family members die or have rest of their lives changed due to mistakes by doctors. Most recent case was a co-worker went in to do a gal bladder removal and they accidently tore a hole in her stomach and going down with a Camera first, had to do emergency surgery to save her life with an emergency bypass surgery she didn't need, she was a health and lightweight person to begin with and now her diet is severely impacted for who knows how long as a result completely changing her life due to a ridiculous mistake. I just don't trust doctors still, sadly not all doctors are Dr. Mikes or else me and my family wouldn't fear doctors so much. A cousin of mine nearly died from a medication her therapist gave her a few years ago and only reason she didn't was her husband happened to walk in at the moment she started having seizers, doctors said it's first time they had anyone survive that situation with this particular medication and everyone wanted to interview and study her and put her on news and so on, so annoying because they even had the symptom and possibility of death as one of the things known about the drug yet they give it out to people anyway without knowing for sure if it'll kill the patient or not, it was just an anti-depressant, that's it, why would you give someone something to fix a far more minor issue with chance of freaking dying, surely there is better ways to treat it, but no doctors will go with the thing that earns them the most money, the medical system in America is based on profit, not the patient, it's why so much private hospitals and all, they only care about making money. They will run you through 20 tests just to squeeze most amount of money out of y ou and literally nothing wrong with you, then make excuse that they are doing it for your well being and that if they didn't and something happened you'd sue them, they have this amazing excuse for giving you most expensive and drawn out options. Your proscribed things that only drag your issues out and have you spending money rest of your life rather then the thing that cures your issue, because they cannot profit from cures, but they sure can profit from things that just help a little bit but not cure it. I'm so tired of listening to stories from other countries where people have a medical emergency and they pay little to nothing compared to us, In America your afraid to call 911 because an ambulance can cost $3,000-6000 where another country you only pay like $100-200. Most people i know never go to a doctor because no one wants to throw way the little savings we have on medical expenses. Just one bad thing goes wrong healthiest in your life in American and there goes your entire savings and any hope of retirement and all in an instant. The American dream, to do everything right, and have your whole life 20-30 years of savings gone in an instant. Then doctors here just make excuses rather then find solutions. Why is it rest of world does just find charging humane charges and America has excuses as to why it has to charge 100x amount, such BS.
@@zengrath I think they just meant how people can be ignorant to the fact that they can be wrong and don't like changing or accepting the fact that they may be.
Yes, or just having a doctor admit that "they don't know"; instead of jerking the patient around unnecessarily. Humility goes a long way, especially in professions that are often full of people with inflated egos. Finding the right doctor makes such a positive impact.
@@zengrath I get what you're saying, and to an extent it is true, however for medical bills and the like you can call the hospital you go to and see if your income allows you to get a chunk of the bill taken away. But yeah Europe seems to be doing it better than us in the healthcare department for sure.
@@picklewart5382 Not in USA, your only given the cost after treatment, you don't get to ask how much everything costs before. So you go into treatment expecting one thing, then find out they put a ton of stuff on your bill that you didn't even get. Everyone i know who has had to go to an emergency room for something has been charged and extra few hundred or thousands of dollars for things they never actually got. A recent relative went for something fairly simple, they charged her a ridiculous amount for things like IV fluids,, yet she never got IV Fluids,, she was in and out in like 30 minutes and never got an IV. It's a joke in USA, your lucky to live in another country when it comes to medical. People in USA unless they are in top 1% of the rich, fear ever going to a hospital or having a life threatening emergency as it often costs a life savings. I think many here would rather die and actually pass on money they have saved to Family rather then waste it all in a hospital and luckily die from a mistake a doctor makes anyway. (3 people died in my family due to doctor mistakes).
As a person who has suffered from persistent genital arousal disorder, I'm glad to see empathetic people talk about it. I was diagnosed with it at 6, but had it since I was 4 years old and I've never really known what it was until now. A lot of people have judged me for it either saying they wished they had it or commenting i was a pervert (yes, my mom said that when she found out) so I didn't like to reach out for help. School was hell, sitting down all the time triggered it the worst and sometimes i would have meltdowns walking up the steps. This is a serious condition, although I don't mind people joking about it I think humor helps me cope with it :)
Different condition, but in the same vein, I was diagnosed with Alopecia Universalis. I've lost so much of my body hair all over my body, and everyone I've told had said "Wow! So lucky!" Like...no.
@@Vladimyra85 Completely understand this ! Unfortunately there's always gonna be people who won't sympathize and say untrue things, hope you're doing well though.
I actually teared up at the first guy. I can't imagine how many setbacks he faced in life, but he actually got through them and is able to have a happy, content life to be proud of is so amazing. Most of us wouldn't have made it that far if we were him, and I think a lot of us can learn about perseverance and courage from him
This is such a misconception- you never what you can endure and still find joy in and find a way to create a life worth living until you have no other choice. And even though, while clearly INTENDED as a compliment, maybe think a little before you say things like “most of us wouldn’t have made it…” or even more blunt that some say “you are so strong, I would have killed myself, I couldn’t take it”. “Compliments” like these imply that you really find the disabled person’s life one you consider not worth living, and that you pity them and can’t look at them and see a whole person, just like you. That you can’t imagine our lives being worth living. You have no idea how adaptable humans can be when given no other choice. Surely you can see how depressing this kind if “compliment” is. We aren’t “brave” or “strong” for making the most out of the hand we have been dealt, like everyone else. We aren’t burdens to those who love us, and they aren’t saints for helping care for us. Everyone needs help and everyone provides help and care to others. Remember, we are all just temporarily abled in life. And you never know when or how disability, and yes permanent disability, will strike you. And of course the only people that get out of that alive are the people who were lucky enough to die very suddenly, not see it coming, in their sleep after a long life with no regrets. That is not the case for the vast majority.
You can see on Dr. Mike's face when they introduce the woman with the hyper arousal condition how upset he is over them referring to her condition as embarrassing.
The real problem is someone ELSE referring to her condition as embarrassing. If she feels embarrassed, let it come from her. Not other people projecting their embarrassment. That's how stigma gets perpetuated.
Its our type of content, most of the media is filled with main stream random things, knowledge + curiosity is what makes a difference, thats what we have here
Dr. Mike makes me feel loved as a disabled person. I feel his compassion so deeply, and I love how empathetic he is. Thank you, Dr. Mike, for being a kind person and teaching the world compassion.
I really admire how the first guy didn’t let his disability hold him back. He’s educated and works, plus he goes out and enjoys life with friends and family. That is amazing! I love your honesty and pure reactions to these videos, thanks Doc!💜
I have the same condition as the first person (Arthrogryposis). The doctors were able to work my head back to a somewhat normal position (I can still make it go all the way back, just not quite as much as him). It was very interesting to see the similarities between us. I cannot walk like he can, but I use a wheelchair and am overall slightly less affected by it. There are other people I know with the condition that are much less affected by it. Unlike him I use a chopstick in my mouth to type. I am currently in school pursuing a computer science degree.
that’s really cool about you pursuing a computer science degree! my boyfriend did it as well and it was definitely a challenge but he enjoyed it! i hope you enjoy it as much as he did!
Claudio is a freaking INSPIRATION. Him having such a strong mind and not saying “I give up, this disability is crippling me and I can’t do anything” is so admirable.
It should also be ok for him to say that, to not be able to function. Often people with disabilities are pushed beyond their limits because of ableism.
I'm honestly not sure how much it's actually an inspiration. Really, what choices does he have? He could live on disability and have a boring life of homebody vegetable or he suffers people, but is employed with severe disadvantages and helps his family. People think that living on disability wouldn't be bad, but it's so boring and dull and people think that going to job is not great, but if alternative to that is doing nothing at home, then it's relatively better. So I actually doubt that it's "strength" rather avoiding boredom and guilt and doing everything within his power against that.
Hearing doctor mike talk about how biking is hard made me so happy. I felt so proud of my dad, he's not only a successful paleontologist at a museum but also training to be a cyclist, he's been to two Leadville 100 races while managing a good family life on top of that.
I would like more doctors to be like Mike, he’s understanding and sympathetic, I have had horrible experiences with doctors yet seeing professionals like him give me hope Edit: Woah, I am in complete and utter shock to see the amount of likes, thanks a lot 💜 take care everyone 💕 and to the ones that feel pain, discomfort or suffer from any illness I do hope you could get better soon ☺️
Same. I’m chronically sick and am getting close to giving up on doctors, they don’t understand or care if all my tests are normal even if me I’m very clearly sick and struggling
i love how real and honest you are. many people would just sugar coat things but you don’t and that’s awesome. thank you so much for everything you do❤️
My brother has the same condition as Claudio, but it affects mostly his legs. We are also from Brazil. It is a very rare condition, and not many doctors know what it is, my parents were lucky to find a specialist one day and he was the one that explained what it was, but before that other doctors broken my new born brother. Right now he is 32yo, and can walk with a cane, and graduated in law school.
my mom has a really rare form of lukemia, miloperilitive neoplasms, doctors dismissed her for years but one diagnosed it!! I’m happy the people in the video got treatment or just support!
I have one too. People ignored my headaches and dismissed me for over a decade and told me it was all in my head and if I treated depression, my headaches would go away.
Congrats on reaching 10M! I am a doctor in the Netherlands (recently graduated) and I am working/doing research at a genetics departement. You said getting a diagnosis is mainly for research purposes, but that is not the only reason to perform genetic testing in such a rare case! It could be benificial for parents or other family members to assess the chance of having another child with this condition. Also, a diagnosis might provide a better prognosis!
Yay 😃 I’m so excited 😆 have you been in a different class this time for the past two days I’m just going on and I’m sad 😢 not even in a good 😌 I am not going for the last time you are in a good 😌 I hope 🤞 can do that and love 💗 bye 😘
Im from the Netherlands! Congrats on graduating! I have a genetic disorder which is not viable for genetic testing! If you’re ever curious or want to know more, please get in contact! ❤️
I read an article about a woman with the sexual arousal disorder. She said it didn't matter what she was doing; she would just randomly have orgasms. She said that one day at work, she experienced about 25 involuntary orgasms within the course of ONE HOUR. What's annoying is that when she first tried to explain to her friends what was going on, they'd just jokingly say, "I wish that would happen to me!" Um, no, you don't. Multiple orgasms sounds like it would be amazing at first, but after just a little while, that has to be exhausting.
One of the best qualities of Dr. Mike, besides his sense of humor, is his compassion. I’m glad he is active in the medical community and can advocate for patients.
I love how he is just fascinated by these odd diseases, and he doesn't have any reactions, like laughing or ew thas gross or anything like that, he isn't judging them at all and I love that about Dr. Mike
ofc he’s very nice and everything about it , but you also have to understand that they teach you in the healthcare field to not make faces or react, in all aspects of the medical field. He’s probably a pro at this point.
On the topic of the first guy “not hurting”- I live with very severe chronic pain (severe full body CRPS) and have quite a few friends who also live with severely painful conditions. I’ve noticed that the people who were born with their conditions didn’t think the pain was that bad… until someone gave them strong pain meds. Then they suddenly have more energy and become more mobile. One friend told me that because all she’d ever known was pain, she didn’t have anything to compare it to so she assumed what she felt was normal. Once she got on pain meds, her quality of life really improved.
this is precisely what i was thinking but along the lines of how constricted his breathing must be without him realizing it. like even if he doesnt experience direct pain from his condition, i cant imagine his breathing isnt difficult. i have cf (cystic fibrosis) and one thing cf doctors always tell our families is to breath through a straw and thats what its like breathing with cf. but for me, its all ive known so i cant even imagine what its like to breathe normally for someone with a healthy lung function.
Exactly, I kept looking at him and thinking "How is he not experiencing ANY pain?". I have a chronic inflammatory illness and experience pain on a daily basis; so it seems impossible for someone with that much skeletal and muscular damage to be completely pain free. But you're absolutely right, when you don't have anything else to compare it to (either because someone was born with the condition or the person gradually became unwell and just forgot what being healthy feels like) your frame of reference drastically changes. People will comment on someone's impressive pain tolerance...but for them, it's just life.
@@milannoelle1576 Excuse my prying curiosity (and you are of course, under NO obligation to reply). But would your condition allow you to be put on a list for a lung transplant? Would that even help? Or would the condition only damage the healthy lungs too?
@@Panda72021 I'm by no means an expert but I've seen some cases of people with cf getting lung transplants and it does help. Cf is a genetical condition that causes the cells in your lungs to produce more viscous mucus, making it so that you can't cough it up as easily. If you transplant a healthy lung that does have the enzymes needed to produce healthy mucus, I can imagine it would help. Wether or not you're eligible for a transplant does depend on the severity of your situation though, since there aren't enough transplants for everyone with cf. If the condition is under control with medications, you probably won't get/need a transplant. (just to be clear, this is general information, I know nothing of this specific person's condition and the severity of it)
As someone with a noticeable disability- I almost cried hearing Dr. Mike speak out about the way people treat disabled people and explaining nearly flawlessly how how we want to be treated- it is honestly just-- amazing. I couldn’t have really said any of it better myself. I feel heard and valued and validated. Thank you Dr. Mike! You’re a smart man haha
Sadly, there are Karen’s out there who think it’s their job to police things like “why are you parking in a handicapped spot” because “you look fine to me, what is your so called disease/disability??” 😤
@@marquisdelafayette1929 yeah and the sad truth is a lot of people DO park in the handicap spots who should not be there. But you should never assume. Thats why it’s important to look for the plaques or plates and remember to use the plaque if you have one. It won’t stop karens from being karens, but yk
I'm disabled. I struggled with this for many years, and still to some degree struggle. I'm visibly disabled, but I can hide it if I want to, and often do, as people treat me differently when they notice. Some people get nasty, but even people trying to be nice often end up treating me, a grown a's man at 6'6 (200cm) as a child suddenly. Nothing changed, except their behaviour towards me. I appreciate people trying to be inclusive, and I hope they treat others that need more help the same way, but just because I became disabled in my teens in an accident, it does not mean that I'm suddenly lobotomized. Keep your heads up! You should never be disappointed in yourself, since even when you feel tired, worthless, angry, upset or feel like self harming, just know that I am proud of you, I'll never judge no matter what you do, and there are tons of people like me who doesn't give a f' about your past, your crimes, your condition etc, who are just happy to be friends! Stay strong!
You too have played a role in the spreading of this message with your first person perspective. We cannot make people do anything (nor should we try, who are we?) but we can continue to model the important things to the world around us and hope we have an impact. Your voice can make a difference.
Case of Claudio is kinda wholesome. His family is golden. He is healthy despite his condition because of them, and he is able to give back. Shows how having a healthy environment and supporting family goes a long way.
I just really appreciated how he handled, and spoke about, the lady with persistent arousal. He was so respectful, and you could tell by the look on his face that he had genuine interest in learning about it. Like a lot of people, I also appreciate that he was honestly frustrated with doctors who continually dismissed her. I have chronic pain, but there’s no way to “see” that it hurts. I have to rely on doctors who trust me. I’ve been very lucky the past 10 years.
For the man in China with facial tumors: actually, the doctors DID reach out across the world, and spent a year asking for help. But they found out that although there have been other patients documented with similar illness, none of those few people were ever operated on, so no helpful feedback was given. There is another man in Hong Kong, "The half bent man" who had similar issue as the 1st story, of the guy with his head backward and upside down. That man in HK was bent in half, forward. So his head was upside down in between his legs, facing backwards. The did operate on him, and is able to get his head facing forward again, the correct way.
How do I find everything hk related bc I am a Hong Kong person, yet never heard of this? I’m glad he is able to have his head facing the right way again though
The first one really got me because you can see how this disabled man lived through all of this and his doctor said he wouldnt live for 24 hours he proved them wrong. This can show you can really do anything.
@@Tweetyresm Other than what doctor Mike pointed about being location, I'm going to assume medical cases such as the one displayed in the video is very rare. So, there might not even be that many documentation on it let alone a way to cure it during during infant stage. But what do I know, I'm not a doctor.
@@Tweetyresm it’s not negative, it’s realistic. For this one man who survived, how many babies with similar deformities died? Especially since the doctor is diagnosing based on visuals and not genetic testing or anything like that.
@@Tweetyresm it's easier to give a parent the hard truth that their baby may not survive rather than give them false confidence that things are okay and then they don't turn out that way
I was born with a super rare genetic nerve condition called "Hereditary Neuropathy with Liability to Pressure Palsies" or HNPP. About 1/50,000 have it, but many of them don't know they have it because of mild symptoms. Basically, I am missing a gene that protects my nerves, so if I rest in a way that puts pressure on my nerves, it can potentially deal permanent nerve damage. Aside from that, a ton of random Neuropathy happens. Sometimes I will have a really annoying crawling feeling on my back for hours at a time, if I stand still for more than like thirty seconds then I get terrible itching in my legs, and so many more random things like that. I got it from my mom who got it from her dad. I'm one of the only people with HNPP who found out they had it under the age of 21. I'm 15, so it can actually be a problem when participating in physical activity with friends or in class. EDIT: Thank you guys for all the amazing comments! I did not think my comment would blow up like this! I figured I would give more insight to the condition. The neuropathy usually isn't too bad. It can be annoying but it usually only prevents me from doing yard work or sports. Also, this condition is currently incurable, but a few doctors around the world are working slowly on a treatment to help nullify the effects. For me, I got lucky with milder symptoms, but if I'm not careful I can make my life much more difficult later on by damaging my nerves. My mom has it pretty bad, but some people later in life can have it so bad that they are practically paralyzed with pain and nerve damage. I am so very grateful that it hasn't happened to me that way. Most doctors actually don't know that this is a disorder that exists, and my mom had been misdiagnosed before going to a specialist for a second opinion and finding out what she had. Due to the minor neuropathy that I had, I decided to get tested for HNPP and tested positive. Another little thing about HNPP is that I actually can't go into the military in most cases. That's just some extra info on the condition. Thanks again everyone!
Hii, I'm 16 and although not as rare as HNPP I have CMT (Charcot-marie-tooth disease)/HMSN (hereditary motor and sensory neuropathy) I can relate to you a bit. I have great difficulty with getting physically active with my friends due to my condition
Perhaps you might find interesting the UA-camr Jessica Kellgren-Fozard. She also has pressure palsies, along with EDS, and she is a disability activist and educator. There is a series on her channel about her disabilities and navigating life with chronic conditions that you might find helpful and encouraging.
Seeing the last woman say that doctors would dismiss her condition, really hit home. I've had doctors who (at the time) couldn't figure out why I was losing weight rapidly, so they just dismissed it as an eating disorder. It's really frustrating and disappointing. But I'm glad there are doctors out there like Doctor Mike :) gives me hope.
Did they ever figure it out? My docs couldn't figure it out when I randomly lost a lot of weight. We ruled out cancer and other serious issues. Their best guess was female athlete triad.
Rapid weight loss can be caused by a thyroid disorder- and as someone with one I can say that it's apparently not common knowledge. I had symptoms for years before I finally got diagnosed and started getting treated.
Hey Doc, Regarding the second person and his athletic pursuits. The Paralympics are separate from the Special Olympics, as the Special Olympics specifically includes intellectual disabilities. Also, when they are speaking about classifications, they're referring to IPC disability class. There are specific disabilities (and the severity of those disabilities) that separate athletes into similar groups to create fair competition. Because his condition is so unique, it's difficult for the IPC to say what classification he could fall under. My job involves working with many of these athletes. Many of them have struggled with classification, having to jump through many hoops to prove their conditions. Many of them also require medications for therapeutic purposes that are on the Prohibited List (opiates, glucocorticosteroids, diuretics, etc.). This requires even more documentation to show they aren't cheating their competitors by taking their medicine. Honestly, I don't think the everyday person realizes all of the struggles these athletes face that goes well beyond their disability. Truly strong individuals. If you can, you should invite a Paralympian on your channel, as I'm sure they could teach people a lot about what it takes.
I might be completely wrong in saying this, but just a quick question. Since he struggles a lot to keep fat on his body due to his condition, can it harm him in any way to exercise as much as he does when cycling due to the fact that it causes people to loose weight or am i just misunderstanding? Its obviously amazing what he is doing and hopefully inspiring to other people who might have the same condition, I'm just very curious and don't mean any harm by this comment.
I have cerbral palsy a few slipped discs and nerve damage, and Dr Mike taking about health issues openly is so refreshing, when ever I meet someone new quiet often they are scared to asked me how my condition effects me or just worried that it will come across the wrong way, and I feel as long as they are comming from a place of compassion or well meaning that fine
Dr. Mike, I’m currently a pre-med student studying biochemistry. I want to say that I love your professionalism and attitude toward cases like the first one shown in this video. It inspires me to be the best person and future doctor I can be. It’s so easy for people to look a someone with a difficult physical disability and count them out, but you encourage his support system and autonomy. I always learn something when I watch these videos. Wishing you the best and I hope you see this! Thanks for everything, .
"pretending that something unsual is usual for your own discomfort" SUCKS! I have a facial deformity and I hate people acting like it's not there or trying to assure that "you can barely see it". Dr Mike is completely right! I know and everyone else knows that my face is massively asymmatrical and there are enough people out there pointing that out to me. Do not invalidate my feelings and my appearance because you don't know how to handle people looking different.
I understand what you’re saying, and I will keep it in mind for the future. But maybe don’t be so harsh on people trying to act like it’s not a big deal. Personally, that’s what I would’ve done before reading your comment. Drawing attention to something I would assume you get enough for already, isn’t something I’d want to do. I would think that bringing it up or saying something might make you uncomfortable, and I wouldn’t want to do that. That’s just my two cents from the other side though, I understand how it could be frustrating, thank you for sharing your feelings💕
It’s not that we don’t understand it, but honestly what are we supposed to do meeting people with a disability because by me acknowledging it can make them feel worse and if I don’t people also get upset and frustrated so it’s just easier to go the separate way because it doesn’t matter what you do your defined as a horrible person if you treat them as usual or unusual
There are people who want people to talk about it and acknowledge their condition and there are people who don't want you to acknowledge it and talk to them like you would anybody else. I have medical conditions that forces me to have to use a cane and wear braces on my legs at a relatively young age and I would prefer people to ignore it and treat me like they would anyone. If someone with a condition wants people to address it they should bring it up so people know that's what they want. It's rude for somebody to say something about somebody else's appearance.
I've been invalidated by almost everybody in my life. When I first got sick, absolutely nobody believed me and decided that I was a) lazy, b) faking, c) depressed and of course I just had to be a drug addict because I took pain meds. I wasn't diagnosed until I developed Epilepsy from being assaulted. I have Myalgic Encephalomyelitis. To this day I still have to act like I had severe depression and addiction just to be able to talk to certain family members. But when I found my most recent doctor and they thoroughly investigated my history, including medications and mental health problems, I was so surprised to be told by another person that I have always been responsible with my medication, according to my refill schedules and that my medical records state that I showed no signs of addiction. Dependence? Yes. True addiction? No. I was also told that after looking through my medical record history that I didn't start to display any depression until I was accused of being an addict and my entire family deserted me. I was left with absolutely no support system, knowing that I was physically ill and not believed. Being validated, being seen and being believed can make a massive difference in not only somebody's life but in their medical condition as well. If you are unsure about how someone might respond to your questions, ASK THEM THAT. Just quietly ask if they are ok if you ask some questions because you want to be able to treat that person with dignity and respect. And as the person who is being questioned, don't get snobby, snippy or flat out furious. Recognize and respect the questioner as well. This is a teachable moment, even in kids. Teach your healthy children how to be respectful and understanding of disabilities and illnesses and teach your disabled/ill children that not everyone is out to make fun of you, that some want to know things so they know how to respectfully be around/with them. This is actually a teachable moment for adults as well, now that I think about it.
I have a rare chronic pain condition called complex regional pain syndrome (CRPS), it has been studied and named the most painful chronic condition in the world. It can cause problems with the muscles, bones, tendons, blood vessels, skin, organs, etc. It can spread throughout the body as well. At the beginning of my journey with CRPS I only had it in my right hand, arm, and shoulder. The pain was so excruciating and unbearable that I was going to the ER multiple times a week because I didn't know how to handle the pain. My fingers were stuck in a fist so tight that my nails went through the palm of my hand and the shoulder has developed frozen shoulder more than once. I used to take pain meds, I was taking max doses of 5 types of meds 3x a day every day for months but they couldn't even touch the pain. I've had 3 nerve blocks into the bundle of nerves that supplies nerves to my right arm and I can now use the limb again. In October I'm planning to have a spinal cord stimulator implanted that will hopefully scramble the pain signals created by my nerves before they can reach my brain - hopefully helping greatly with the pain. The CRPS has now spread from my right hand, arm, and shoulder to now in my right hand, arm, shoulder, right side of my chest, back, and neck, right cheek, right side of my lips, right side of my gums, and right foot
My family has a medical history that isn't all too great, and knowing that people like Doctor Mike acknowledge rare diseases and such, makes me feel better about the fact that if I inherit anything unpleasant when I grow up, there's at least some people in the world who are willing to help.
I really appreciate you telling people it's ok to identify when someone is different and it is ok for them to identify how they feel if they don't feel different. The most important thing is that we are all kind and we approach everyone with kindness and respect. Thank you being so respectful and spreading good/reliable information when the internet can be full of incorrect and misleading information.
@@grgamer8470 but on a real note most people that ik that suffer from something that makes them noticeable different from what the average person looks like on the outside knows that they are different. It's ok, its not a bad thing and it shouldn't be treated like something we should be afraid of or afraid to be around. We need to make it a more comfortable situation so that Noone is afraid to be in public for fear of being stared at or made fun of. Thats my point. When we see someone different and look away or don't make eye contact that's way worse than just being normal like we would with anyone else. And teach our children the same, to be kind.
@@fawndesilva1607 i didn't mean in any way to treat these people like they don't exist or in a more negative way but to try to push out mechanisms to innovate treatment for every decease. And most of all to improve as human civilization. Most of the bad things like cancer etc are outcomes from our activities.
Is a disabled person, Dr Mike, I really appreciate you treating this like any other video. You aren’t getting “shocked” and playing it up when a new person with a new rare illness pops up, and you can tell you genuinely are just curious, but care more about the person than “getting to the bottom of this illness” and seeing the person. You’d be SHOCKED at how many Drs don’t care, and treat you differently when you aren’t “normal and healthy.” Though, you may not be shocked since you probably deal with it just as much as I do lol
Your compassion, empathy and non judgement of these poor and beautiful souls almost made me tear up, wish there were more people like u in the world, let alone more doctors like you ❤
This was really interesting. The guy with the facial tumour looked so much happier after the surgery. People often judge things like this in a negative way and often don't understand the impacts it has. Was good to see a medical viewpoint that embraced that people will likely react a certain a way initially and encourages them to find out more about the condition.
Try going about your business with a couple of weighted blankets over your head for 15 minutes. It wouldn’t even come close to what this guy has to go through.
@@sunshine3914 Yup for sure, i respect him majorly for enduring such a thing. But i am glad they were able to remove so much of it to where he can live a better quality of life. Maybe one day they can help him more :) science is going further and further each day.
I had HS since I was a kid and although it's not a rare disease, I wish it got addressed more. I'm glad that Dr. Mike stated to treat others with empathy because people judge too quickly without really understanding what their condition limits a person to do. For example, I've been told from men/women to shave, but I cannot since it could add to my boils. If you read this, please be kind to each other
Fellow near-lifelong HS sufferer here - it's so incredibly tough to navigate life with it (the sheer pain), but it has given me so much more empathy as a medical professional. Hang in there friend.
@@niaharmes9256 don't know the actual full name, but I'm pretty sure they're referring to acne inversa? it causes painful lumps on the skin that hurt a lot and break open. there's not enough studies about it, so its difficult to treat and usually lasts a very long time
I like that you mention that sometimes a patient knows more about their own condition than the doctors do. I have been diagnosed with Gastroparesis. It’s not extremely rare but it is unusual enough that there are very few doctors that know anything about it. I’m in a support group with over 40,000 members and almost all of us deal with issues of sub par medical care because we can’t find anyone that can or is willing to help us. We get blown off a lot.
Dr.s are still people. Med school makes them educated enough to help with most things, but it doesnt make them infallable knowledge Gods of medicine and physiology.
@@TheDocbach Doesn't have to. It should still also put some focus on empathy and teach them how to do some research for their current patients. No one needs to know everything but they could be able to get at least some degree of information about diseases they don't know about. At least when they have a patient with it.
That's usually where they refer you to someone else. Likely a specialist if they actually care for you. The physicians who gave up on the colored lady also reveal a huge gaping problem. Physicians can judge your needs based on who you are and even your skin color. It shouldn't be that way, but it happens all the time. John Oliver did a whole episode on just that issue alone.
What are your symptoms if you don't mind my asking? I have wondered if I have it. After years of starving myself and not having gut sounds, throwing up because it feels like I'm not digesting anything, fatigue are just a few things that may be signs of it but both doctors have dismissed me. I'm fat and they didn't believe me that I don't eat often.
@@kimberlydlapp3441 started off with excruciating abdominal pain. Couldn’t keep any food or drink down. Lost 45 pounds very rapidly. Constant nausea. Diarrhea. Bloating. I had a gastric emptying test done and that’s how I got my diagnosis. I can only eat very small amounts of food at a time. Very limited diet. Malnutrition.
God bless Claudio. He's such an emotionally strong person for never giving up and staying positive and pursuing his dream of being an accountant. Sure he looks different but he has a kind soul and a warm heart!!
I have a severe form of Crohn’s disease, and spent many years of my life Severely underweight - slightly less severe than Tom, but in a similar range. I personally loved people asking me about my body and why I looked the way I did. It made me feel valuable. What hurt was when people would avoid talking to me, because they felt uncomfortable around me because of my emaciated condition.
My favorite magician, Dynamo, has Crohn's. Really skinny dude. I remember he was hospitalized for a while, and the medication made his face look puffy and chubby. Wild stuff. Anyways, from an internet stranger, hope you're doing ok.
how are you doing these days? I hope you're well and in remission. I had IBS so painful they thought it was Crohn's but negative, though I can relate to the pain and life changes, debilitating. I love someone with Crohn's so pray he and everyone suffering from it find peace in their body and mind as soon as possible. that being said I've heard good things about many kinds of psychedelic therapies helping put even the worst cases in remission! you are beautiful, you are loved, you are valuable, you are worthy and most importantly you are enough, you do not need to do or be anything more to be valued as you are, and you are not responsible for anyone else's happiness! ☺️ ❤️🙏❤️ God bless
my ex has crohns and i remembers him always talking about how he is in pain and how insecure he was of his weight. i understand how you feel and i'm glad you're able to feel proud of it
I was just diagnosed with Crohns back in August. Its been pretty rough as Ive been dealing with great pain, but a good support system has helped greatly physically/mentally. Weight loss Im dealing with as well, but my Dr.’s arent too concerned.
It’s amazing to see such an empathic and non judgmental person. Doesn’t happen quite often after many experiences whether that me or my family where they are dismissed. He truly tries to help ppl or be more knowledgeable about the situation. Thank you Dr. Mike you have once again restored my faith in doctors, that are some just like you!
I ❤Dr Mike's emphasis on understanding and empathy! As a doctor myself, I love learning about rare conditions. But for them and every single patient, I try to think of how they feel, how they cope, and how they can thrive. We can only be great medical professionals and become better as a society if we CARE about and try to UNDERSTAND what other people are going through!
I love and appreciate how you find dismissal in the medical field disappointing. As woman with chronic condition, I'm pretty used to it, so my reaction is "Yeah, sounds right."
I've had chronic digestive illness since I was 13 and have never really been treated for it. Every doctor insists on trying proton pump inhibitors, ignores when I tell them I've been on them before and they make it worse, then just to prove it I'll take them until my stomach stops functioning and I'm forced to stop so I don't end up in the ER, then the doctors just shrug and tell me to just deal with it... Whatever this condition is exactly (best I've got is IBS but it's got some differences that makes me think there's more to it) literally robbed me of my adolescence and even stunted my growth because I couldn't eat enough
I hate it when your doctor ignores you when you tell something is wrong. I got hit by a car 6 years ago and have been fighting for proper medical care. I wish I could see a doctor who cared
@@vaughnhaney7020 SO HELP ME GOD you read like you've got Crohn's Disease... It frequently gets misdiagnosed as some generic inflammatory bowel issue or other (or just "Inflammatory Bowel Syndrome" which is essentially Dr-ese for "yeah, it's f***ed and we have no idea why")... AND it's regularly diagnosed in teens when they miss the adolescent growth spurt(s), thus stunting growth... If you haven't, seek a Crohn's literate doctor... You can find a decent read on Wikipedia, which mentions a few other "related" G.I. tract issues, syndromes, and disorders you might also ask about (in case they manage to dismiss Crohn's)... It might also give you some inspiring questions to ask on your next phone call(s) and visits... GOOD HUNTING!!! ;o)
@@vaughnhaney7020 i have IBS and it can be terrible, but I would look into IBD if I were you. It is similar to IBS but generally is a more serious and chronic condition. I hope you can manage to find relief for your pain if you haven’t already!
I find a lot of DO’s are like this. I used to work with a DO and it was like night and day working with her compared to a lot of the MDs. Still doctors, still on the same level, but DOs have a lot more education and training in treating the person as a whole
Amen, health is holistic. Not just about the body but the mind and the spirit too - I have seen first hand many things that prove it beyond this beyond all doubt and a cursory intellectual consideration of the human as an organism can surely only lead to the same place? Would you change the tyre on you car but leave the fault in the wheel bearing causing the tyre wear or damage another component getting the wheel off or put the incorrect tyre on as a replacement? And that is for a simple machine, let alone a compex human being.
I’m a genetic counselor and I think it would be cool for you to do a video regarding the importance of knowing your family history for hereditary conditions, especially regarding hereditary cancer syndromes!
I have a genetic disorder and it was so hard to figure out what was going on because that side of my family has several question marks (my grandmother’s father was unknown being a major one). I keep track of what I can!
This is a first for me. I named Carlos' condition in 5 seconds. My daughter (now 39) was born with it (AMC). A note on intervention: In 17 years there were 17 major surgeries to improve functions. In each surgery she gained something, and lost something. . It is extremely difficult to determine if the balance was worth it. She has been using a power chair since she was 3, but she was well on her way to walking before the 8th surgery, which left her with a fused and painful ankle, She is doing OK now, she has a Master's in experimental psychology, and is working as a government social worker - her choice of a dream job - but she services her clients exclusively from a power chair. This level of support had me carrying a quarter million in medical debt for nearly 30 years. Believe it or not, medical insurance spent more than I did. We are still paying off the student debt, but heck - who isn't? Really great video.
My grandma and father both have neurofibromatosis! Theirs isn't nearly as severe as the case you showed but it's awesome to see these rare diseases brought to light when they affect someone close to you.
There is a type 3 that most don't know about because it's classified as a Rare Disease called Schwannomatosis my grandma, my mom and me suffer from it. However the most affected is my mom. :/
My sister-in-law passed away years ago because of neurofibromatosis. She unfortunately had lumps on the outside of her body and inside her body and it sadly took her life when she was 45. It caused her veins to slowly leak and eventually took her away from us. It is such a sad disease.
It's so refreshing to see a doctor who actually cares. My doctors have always ignored ores me and my issues. Now it's at a breaking point and I finally was able to get some answers
The only time I have experienced doctors who actually care and give good service is when I travel to Africa. It's not what you think. Because so few Africans can afford to see a doctor, they're not overworked. That's why doctors in the West don't care. They're worked to the point where they don't feel human anymore. There has to be a balance.
People ignore some facts about how it feels to be in the doctor's shoes and how sometimes patients are also nothing better how they act sometimes. People, expecting from them like they are machine as they need to do everyting while people are still going back to bad habits so ignorant people can be. Too much hate for doctors and too much love for streamers or youtubers or sport players
With the first person, I’m surprised that he doesn’t have breathing problems. I have scoliosis and I have bad asthma. My curvature is just bad enough to aggravate my asthma. I couldn’t imagine what Claudio’s lungs go through.
Think you’re body gets used to it so long as you don’t already have lung problems. I was a 75 degree S curve before my surgery and I didn’t have any limitations
The disease I have is super rare. Out of all the people on the planet who have kidney disease get only 7% of adults get this and only 4% of kids get affected by it. My doctor used to call me a rare bird which i thought was sweet in a weird way lol. It’s called MPGN II. Im 31 and have had this since I was 13 so I’m one of that unlucky 4% of people with kidney failure. I have dialysis three times a week for 5 hours a treatment. Sometimes it sucks because I don’t LOOK sick and people expect me to be a normal able bodied person but I get fatigued really easy. Even my family doesn’t quite get it. Disabilities aren’t always visible. *I hope this all made sense I didn’t know how to put it into words.
It does. People really have to stop judging the book by its cover. Not because someone looks good on the outside doesn't mean they have no sheet going on in their lives privately.
You’re 100% right. Not every issue is visible. 13 years ago I was diagnosed with Idiopathic Hypersomnia with long sleep cycles. I’ve been like this my entire life. I really only started complaining about it at around 14 years old, but I was 30 before anyone would listen. My mom told me that I once slept 22 hours in a row… I wasn’t yet a year old. She kept calling my pediatrician and checking to make sure I was still alive. I’m just glad that someone finally listened and I’ve reacted well to non-addictive medication. All through my teens, people called me lazy, accused me of doing drugs, accused me of not sleeping at night…. All kinds of things. Not my family, but most other people did. Just because it’s not something you can see or have never heard of, doesn’t mean it’s nonexistent.
@@MsAubrey TRUE. People are quick to judge maybe due to past experiences, maybe due to them being savage for savage sake, peer pressure can lead to that and many other causes. But when a situation seem to be way to frequent or even just straight up bizarre, people should learn to ask questions, seek for answer. Being ignorant in this era of information is a crime against ones intellect and people ignorantly lashing out at other based on their biased views are just ....🤮🤮🤮
I actually have to feel sorry for Amanda, I can't imagine the state of anyone like her mind had to be in. I hope anyone with that disorder gets the help then need.
I found these videos today, and I've become fascinated Not because of the medical info, or the things these people go through/deal with But because you are giving lessons on compassion and empathy, and there's no other class like it ❤️
With Claudio, I was honestly most surprised that he was able to breathe with no problem considering how far back his head is. Guess despite the other deformities he has, that area kept itself sorted so it works with his body shape. Also, whoo hoo 10M! Way to go Dr. Mike! Keep bringing smiles and good knowledge to the people!
I doubt his breathing capacity is normal. It's just that the guy doesn't tax his breathing because either he's laying in bed, being carried, or moving very slowly across the floor.
Well, I presume he did grow slowly into his shape or started like that... if the rest of us ended in that position a short amount of time we'd be quite done for.
It's really interesting to learn about these disease not just in a sensationalist way but also from a medical standpoint. And we should really appreciate Dr. Mike honesty and professionalism in explaining these conditions.
I totally respect all the patients in this video, but I have to admit that Claudio stood out to me the most. Inspiring. He is f***ing inspiring! Some folks whine about how life has been unfair to them, and they're able-bodied people, and then you look at this guy. He is awesome.
He is awesome! But I’d like to point out that it’s valid for able bodied people to complain or whine about certain things. You’re not wrong as there are many privileged people who whine about things. But also this comment can give off the wrong message that if you’re not suffering with xyz, you’re not in a position to whine or complain. Not letting yourself complain freely because you’re not “suffering” enough is a dangerous slope i went down before. It’s very detrimental to mental health. Everyone is the world is allowed to feel their emotions and it’s always valid. Because how you feel is internal and personal. However Claudio is fcking awesome and a absolute champ
He is a champ and has my upmost respect, but let's not put down other people's struggles in life, they may be able-bodied but we don't know what is going on in their lives or if they are struggling mentally (mental health is something a lot of people ignore when it comes to overall health).
We often forget and take for granted just how fortunate most of us are, and videos like these are really eye-opening to that. Major applause to these people for not giving up hope or letting it affect the quality of the life they want to live
I am 12, and was diagnosed 3 months ago with CIDP. (Chronic Inflammatory Delaminating Polyneuropathy) and hearing Dr. Mike say something alone the lines of “if you have an illness your the expert of it” really touched me. It was hard because I didn’t know how to explain the feeling, or no feeling at all really, that I had.
@@AstralArbourSysI was on UA-cam at 5. It’s really not that bad for kids to be on because most creeps’ comments and attempts will be blocked, reported or deleted
I know; I have a genetic orthopedic condition that is the sort that even most specialists haven’t seen “in the wild.” Fortunately I haven’t needed much in the way of medical treatment for it since I was a child.
13:50 When I was pregnant, I got this pain across my right side. It felt like a stripe going across my ribs. It felt like nerve pain, so i asked my doctor. He said “You’ll have to deal with it, like everyone else.” It persisted after I delivered my baby, and I wonder if nerve ablation would help me. I will ask my new, better, more awesome doctor. Thanks Dr. Mike
I had genetic testing done recently and got my results this week. This test was done because I am 42 and diagnosed with breast cancer in April. The good news....I do NOT carry the BRCA genes so less worry for my kids. The test checked 77 other types too. All negative. Such a relief.
my mum is 43 and a half now, she was diagnosed at 41, right at the start of COVID, with breast cancer, she had an operation and radiotherapy and was cleared that October, and has to take medication for 5 years and have yearly mammograms, but she doesn't have the BRCA gene too, which was a relief for her as she worried she'd potentially have passed it to me too. Although they say now, 1 in 2 people will get some form of cancer in their lifetime. Which is terrifying. I wish it didn't exist. Causes so much pain and misery to so many 🥺 How are you doing? I hope you are doing well. Sending many hugs to you 💖
I’m so happy for you. I carry the BRCA1 mutation, my mom died at 45 and so did four other of her immediate family members, one after 70 (also immediate), and a 60 year old cousin of her mom’s. I had a preventative mastectomy. Haven’t thought about breast cancer since.
@@chromachan 💕. Oh my goodness I'm so sorry about your mum. When she told me I was terrified, thankfully they caught it early, I can start getting checks and such from around my 30s, I'm 21 now. They did testing, and she doesn't have the mutations, her mum had 3 different cancers before she passed at 38, 34 years ago. So they thought it might be hereditary. Thankfully not. I can't imagine how it must feel knowing you have the mutation and also to lose a parent. Was so terrifying just finding out she had cancer. Genuine fear I had when I found out. Especially after how young her mum was, my mum was a child. There's been a lot of cancers in both sides of the family, but I'm glad I'm aware of it and I'm constantly checking myself. I have thought about a mastectomy, but im finally okay with my breast size and I'm worried about surgery and having them gone. Wish cancer didn't exist 🥺 Again, I'm so sorry about your mum, I hope you're doing okay ❤️
In the first case, that the family lost faith in medical doctors (as a whole) and refused to return for follow-up regarding his condition, goes to show how important *_COMMUNICATION SKILLS_* are to healthcare professionals. Had they been more open about the limits of their knowledge and spoke with less definitive certainty over stuff they did not know - never mind guarantee - it's possible he and his family could have continued seeing healthcare professionals and get better answers as to what was causing the deformity and/or what treatments or adaptations might be available to him; even if not to cure the condition (which would be unlikely) but to at least improve his quality of life by making things that little bit easier for him to do things.
for the first guy, it's incredible he can live pain-free, he definitely has troubles due to the deformities, but seems to be able to live well and even pretty independently. so much props to him. and so glad in the current world there are jobs that require almost no physical mobility, if you got the brains you dont need almost anything else to succeed in life
I love how Dr. Mike is pointing out the different perspectives people can have, like that something is unusual or different and acknowledging that that's ok, as long as you're kind about it! Like we don't have to pretend everyone is the exact same, because we're not, just be accepting
Whell of it makes him happy. It's better to take risks and live life then to stay stuck at home being miserable. One of my favorite things is hiking and that's not really ideal with my POTS. At any moment It could act up and I can faint it's a risk but I'm willing to take it to enjoy life. You only live once best not to waist away in a basement somewhere
I wish more doctors were like Dr. Mike. He’s so kind, educated, and empathetic he really cares for the patients and the situations they’re born into amazing video. 💜
@@smashmusique yes you're right. Doctors (and other people) should be honest with others, and tell the truth. However, the way it gets delivered matters also. There are some that are actually rude and might say offensive things. It's best to be kind and empathetic towards others, but also say the truth and fact while avoiding to say the wrong thing.
@@phoenix2.020 sometimes, psychologically, it's best to hear offensive things. kindness doesn't always work. You can be empathetic and ''mean'' and it will be the best for the patient
@@smashmusique I think that's why it's important for a doctor to develop a strong patient-doctor relationship. That way they know and understand you better and can inform you in a more productive matter. Sometimes being blunt and almost offensive in that bluntness will do more harm as it leads the patient to feeling hurt, developing a mistrust and negative connotation with doctors, and then in the end a refusal to visit a doctor again. For some people a kind and soft delivery is best while others do better with a quick and blunt answer.
As a nurse in a Genetics clinic, I both love and dislike the comment that doing genetic testing (to find/confirm a diagnosis) wouldn't likely change treatment. On the one hand, I wish SO many more PCPs had that understanding when referring patients to Genetics (looking at you, hypermobile EDS). But on the other hand, the second patient could potentially benefit from a treatment or metabolic diet that he's not currently on; and wouldn't be put on if he's not seeing a biochemical geneticist or metabolic provider who can evaluate him for any inborn errors of metabolism or mitochondrial disorders. Overall, having a PCP understand that genetic evaluation and testing isn't always beneficial is rare (and that we can't just test for anything and everything), so props to Dr. Mike for that!
I love your genuine attitude to these cases, the way you educate without judgement is really refreshing in a sea of people who will just point and laugh.
I am an accountant and dislocated my shoulder. I struggled to do my work for weeks as it was so uncomfortable. Mad respect for Claudio. To become an accountant after what he has been through. That is awesome.
I have Neurofibromatosis, not that bad, but I still have it. People with my condition are getting harassed. One woman got recorded and put on TikTok, and was accused of having monkey pox. Thank you for bringing awerness to this.
i hope some day you can get cured for it if anyone in the field of science ever develops a cure, I've researched the disease and it is quite depressing and seems kind of hellish. Also thank god i do not use TikTok and have a blind eye to it.
I also have nf, also not to that degree, but I have had a lot of issues having some of my nierofibomas removed. Several of the doctors I had seen just dismissed them as purely cosmetic ignoring the fact they caused me substantial pain. Luckily I was able to get referrals to doctors that actually understood that having tumors in those areas would cause significant pain and was able to have them removed. My heart goes out to all those suffering with nf or other disorders that are unable to receive help or get answers.
Yeah, especially since someone with Neurofibromatosis recently got harassed and posted on TikTok without her permission. As someone with tho condition, it's nice to see someone being so kind about it.
The guy with the facial tumor- god I feel awful for the dude, I didn’t think any living human could look that way, I thought it was something out of horror games, I actually gasped
I appreciate your professionalism and empathy. Acknowledging a lack of education or finances or access to healthcare is important. You show care, yet explain everything so reasonably. I have a rare genetic condition, so I appreciate how you handled this.
As a disabled person, I find nothing wrong with “Body Bizarre”. Having healthy, able-bodied people discuss disabled people as some sort of “other”- with kid gloves and “explanations” how to think about and interact with us as if we aren’t just like YOU ALL, and the basic “treat us how you would want to be treated” rule doesn’t cover it all, tho…. Just say that, then model it. Because you know what? Unless you die very suddenly, EVERYONE IS ONLY TEMPORARILY ABLED, and no one knows when and how they will become disabled.
@@Panda72021 Well duh. You're acting like that's some kind of deep philosophical concept that you have just found accurate. Of course that most people are just temporarily abled, because we are all living our temporary lives. Except for the fact that I've come to discover that when I was in kindergarten, when I suddenly realized that *nothing* in the world is 100% certain, except for the fact that only constant change is the only thing that is absolutely certain in life. I find strangely soothing that lil discover of mine. 😁
I'm really glad you have so many videos on your channel reacting to all these TLC shows. They need someone to bring some humanity to them and you're exactly the right person to do that.
I feel bad for the last story. The young lady. I've heard about it and how others would laugh. I hope she can find relief. Poor kid. Dr. Mike thank you for showing empathy and maturity on these cases. I have seen medical professionals act ridiculous in some situations.
I've had pgad since my early teens. It's horrible, extremely uncomfortable and painful. I haven't found any doctors or gynecologists who understand it well enough. Thankfully I take a medication that causes sexual disfunction so it helps. It wasn't prescribed for pgad it just helped accidentally because of the side effects. I'm still looking for a specialist because I'd like to one day stop the medication but, I can't because of the persistent genital arousal disorder.
This just made me feel better for my daughter. I still wish she had a diagnosis at 6yrs now but we've been managing whatever comes up. We've seen specialist after specialist including genetics. Still no definite answer. It was helpful to hear you say it's more for just the paper side of things.
That first guy is actually insane, with that disability he is somehow still able to get a job as an accountant just shows how insanely strong willed and determined he is pretty inspiring.
Paul Alexander is a polio survivor who got his PhD in law and became a practicing attorney in an iron lung. People who overcome adversity and challenges are so inspiring for me. I love reading stories of these great feats of human strength.
i know right? its unbelievable that he got a job as an accountant with limited movement!
The first guy, his poor neck! It looked so painful.😥
And the support from his family is incredible
Amazing
I have some chronic illnesses, and Dr. Mike saying "the patient is probably the biggest expert in their illness" made me scream out loud. Thank you for validating us!
Yes! I love that because so many doctors do not think that way!
Sounds like Zach from the Try Guys.
In how it affects you, yes; I totally agree!
especially in conditions that don’t have any visible symptoms
since they're the only ones who feel it then... patients = knows a lot about their illness
Man... seeing people like the first poor guy and the fact that he looks happy and he even managed to get an education with his difficult situation really makes you appreciate the luxury of being born a healthy person
He s disabled but does it rly count as unhealthy? Idk
You know what they say don’t feel sorry for someone feel proud of them for what they’ve done
@@bamb8s436 i mean he obviously has a serious health issue that makes it incredibly challenging for him to live a normal life, so What do you mean is it unhealthy?
@@bamb8s436 I Mean yeah, Sure he might face challenges with doing some tasks that we take for granted, but he still function in the world, with a job and a family. To me that shows that he is in good health, aside from a few other things. But then again, I am no doctor so take what I say with a grain of salt
@jucuev I agree
I actually smiled when they said that first guy is “pain free”. I guess I felt relieved for him. Maybe it’s human nature to see a person contorted like that and just assume they’re in pain, I’m really really glad he’s not.
Yeah it looks excruciating.
yeah same , but i laughed so hard when i saw him in first frame. we will meet in hell😶🌫☠
Me too
Me too!
Whatever it is . Atleast he is not in pain and crying everyday.
Ofcourse life is tough. But it would be tougher in pain 😢
Even when things are not going as planned there's little mercies like that.
The fact that Claudio can get around is such a boss move. I’m in awe of his positivity.
Let alone be an accountant
He is like: Time to crunch some numbers. 🙃
@@Grocel512 Not the emoji 💀
Dude. How baller that he is able to get around so nimbly and get on with his life. He's so positive and practical. God bless!
I hope he lives a good long life at least as long as he can which seems like it’ll be a normal amount
I saw a documentary about a child who had a rare disorder where she couldn't feel pain. It was a major problem. She gouged one of her eyes out as a small child, her parents had to check her body every day for wounds, especially her feet. They were terrified what could happen if she developed something serious that they couldn't see, such as appendicitis. The father said that while most people would do anything to take away their child's pain, he would do anything to make her feel pain.
I think that goes to show the point that we may all complain about pain and think it would be awesome without but it serves a very important purpose and things are far worse if you don't feel pain. Just because you may not like the job it has doesn't mean that you shouldn't be happy that it's being done.
Hand-in-hand with that, I frequently don't keep up with the instructions for pain med's given by a doc'... I'd rather feel some discomfort than forget the issue/injury and end up making it worse for myself... from ripping stitches loose to re-breaking bones or otherwise wrecking myself...
That's not to suggest that one should be a "damned fool" about it, nor that I'm a glutton for punishment... Only that I AM an adrenaline junky, and I can recognize when I should probably stay at least a little bit uncomfortable (so long as it's not agony) to keep my figurative head in the game. ;o)
CIPA
It’s better to have a pain you can take away rather than no ability to feel it at all
Imagine touching boiling water but you cant feel the burn on you skin
"Not a specialist. I need more info" is a sentence I would really wish to hear more in life.
But sometimes it's said too much,, where someone wants to direct you to a specialist when its' not needed and just ends up costing a fortune for no reason. There has been plenty of cases of people being directed to a specialist just to get more money out of a patient. I'm sure some doctors get a kick back or some benefit by recommending patients to another doctor, just like some doctors only prescribe a particular brand of a particular medication to a patient based on which ones give them the biggest kickback or profit and not necessary which is most Benicia to customer with both price and function. There is far too many evil and greedy people in this world, can't just blindly trust anyone, doctor or not. As much as i enjoy watching Dr. Mikes videos, most of my family have had absolutely horrible situations with doctors in my life time and have had many family members die or have rest of their lives changed due to mistakes by doctors. Most recent case was a co-worker went in to do a gal bladder removal and they accidently tore a hole in her stomach and going down with a Camera first, had to do emergency surgery to save her life with an emergency bypass surgery she didn't need, she was a health and lightweight person to begin with and now her diet is severely impacted for who knows how long as a result completely changing her life due to a ridiculous mistake. I just don't trust doctors still, sadly not all doctors are Dr. Mikes or else me and my family wouldn't fear doctors so much. A cousin of mine nearly died from a medication her therapist gave her a few years ago and only reason she didn't was her husband happened to walk in at the moment she started having seizers, doctors said it's first time they had anyone survive that situation with this particular medication and everyone wanted to interview and study her and put her on news and so on, so annoying because they even had the symptom and possibility of death as one of the things known about the drug yet they give it out to people anyway without knowing for sure if it'll kill the patient or not, it was just an anti-depressant, that's it, why would you give someone something to fix a far more minor issue with chance of freaking dying, surely there is better ways to treat it, but no doctors will go with the thing that earns them the most money, the medical system in America is based on profit, not the patient, it's why so much private hospitals and all, they only care about making money. They will run you through 20 tests just to squeeze most amount of money out of y ou and literally nothing wrong with you, then make excuse that they are doing it for your well being and that if they didn't and something happened you'd sue them, they have this amazing excuse for giving you most expensive and drawn out options. Your proscribed things that only drag your issues out and have you spending money rest of your life rather then the thing that cures your issue, because they cannot profit from cures, but they sure can profit from things that just help a little bit but not cure it. I'm so tired of listening to stories from other countries where people have a medical emergency and they pay little to nothing compared to us, In America your afraid to call 911 because an ambulance can cost $3,000-6000 where another country you only pay like $100-200. Most people i know never go to a doctor because no one wants to throw way the little savings we have on medical expenses. Just one bad thing goes wrong healthiest in your life in American and there goes your entire savings and any hope of retirement and all in an instant. The American dream, to do everything right, and have your whole life 20-30 years of savings gone in an instant. Then doctors here just make excuses rather then find solutions. Why is it rest of world does just find charging humane charges and America has excuses as to why it has to charge 100x amount, such BS.
@@zengrath I think they just meant how people can be ignorant to the fact that they can be wrong and don't like changing or accepting the fact that they may be.
Yes, or just having a doctor admit that "they don't know"; instead of jerking the patient around unnecessarily.
Humility goes a long way, especially in professions that are often full of people with inflated egos.
Finding the right doctor makes such a positive impact.
@@zengrath I get what you're saying, and to an extent it is true, however for medical bills and the like you can call the hospital you go to and see if your income allows you to get a chunk of the bill taken away. But yeah Europe seems to be doing it better than us in the healthcare department for sure.
@@picklewart5382 Not in USA, your only given the cost after treatment, you don't get to ask how much everything costs before. So you go into treatment expecting one thing, then find out they put a ton of stuff on your bill that you didn't even get. Everyone i know who has had to go to an emergency room for something has been charged and extra few hundred or thousands of dollars for things they never actually got. A recent relative went for something fairly simple, they charged her a ridiculous amount for things like IV fluids,, yet she never got IV Fluids,, she was in and out in like 30 minutes and never got an IV. It's a joke in USA, your lucky to live in another country when it comes to medical. People in USA unless they are in top 1% of the rich, fear ever going to a hospital or having a life threatening emergency as it often costs a life savings. I think many here would rather die and actually pass on money they have saved to Family rather then waste it all in a hospital and luckily die from a mistake a doctor makes anyway. (3 people died in my family due to doctor mistakes).
As a person who has suffered from persistent genital arousal disorder, I'm glad to see empathetic people talk about it. I was diagnosed with it at 6, but had it since I was 4 years old and I've never really known what it was until now. A lot of people have judged me for it either saying they wished they had it or commenting i was a pervert (yes, my mom said that when she found out) so I didn't like to reach out for help. School was hell, sitting down all the time triggered it the worst and sometimes i would have meltdowns walking up the steps. This is a serious condition, although I don't mind people joking about it I think humor helps me cope with it :)
So happy that u have found a way to cope, wishing u the best
I wish you the best!
they shoudl of got hi ma neck brace as a baby and stuff to help him and growing up to atleast get his neck straight
Different condition, but in the same vein, I was diagnosed with Alopecia Universalis. I've lost so much of my body hair all over my body, and everyone I've told had said "Wow! So lucky!" Like...no.
@@Vladimyra85 Completely understand this ! Unfortunately there's always gonna be people who won't sympathize and say untrue things, hope you're doing well though.
I actually teared up at the first guy. I can't imagine how many setbacks he faced in life, but he actually got through them and is able to have a happy, content life to be proud of is so amazing. Most of us wouldn't have made it that far if we were him, and I think a lot of us can learn about perseverance and courage from him
He rather faced forwardsets
I bet hes really good at acounting
This is such a misconception- you never what you can endure and still find joy in and find a way to create a life worth living until you have no other choice.
And even though, while clearly INTENDED as a compliment, maybe think a little before you say things like “most of us wouldn’t have made it…” or even more blunt that some say “you are so strong, I would have killed myself, I couldn’t take it”. “Compliments” like these imply that you really find the disabled person’s life one you consider not worth living, and that you pity them and can’t look at them and see a whole person, just like you. That you can’t imagine our lives being worth living.
You have no idea how adaptable humans can be when given no other choice.
Surely you can see how depressing this kind if “compliment” is. We aren’t “brave” or “strong” for making the most out of the hand we have been dealt, like everyone else. We aren’t burdens to those who love us, and they aren’t saints for helping care for us. Everyone needs help and everyone provides help and care to others.
Remember, we are all just temporarily abled in life. And you never know when or how disability, and yes permanent disability, will strike you. And of course the only people that get out of that alive are the people who were lucky enough to die very suddenly, not see it coming, in their sleep after a long life with no regrets. That is not the case for the vast majority.
I need to see god looking at that first guy lol. IM SORRY
@@juliejanesmith57 well said👍
You can see on Dr. Mike's face when they introduce the woman with the hyper arousal condition how upset he is over them referring to her condition as embarrassing.
I don't think any medical condition is really ''embarrassing''.
It isn’t embarrassing, no condition is embarrassing, people are just judgemental
@@ardinaattia8 judgemental
@@arushamshafeeq9428 Yall know what I meant lmao
The real problem is someone ELSE referring to her condition as embarrassing. If she feels embarrassed, let it come from her. Not other people projecting their embarrassment. That's how stigma gets perpetuated.
I still find it crazy that a doctor is far more entertaining than 90% of most content creators nowadays. Keep going Doc, we love you!
100% agree!
Its our type of content, most of the media is filled with main stream random things, knowledge + curiosity is what makes a difference, thats what we have here
😍
Yeah I always liked reading medical books but never thought watching much other than video games would be cool. Dr. Mike is amazing
Of course! Dr. Mike is Dr. Mike.
Dr. Mike makes me feel loved as a disabled person. I feel his compassion so deeply, and I love how empathetic he is. Thank you, Dr. Mike, for being a kind person and teaching the world compassion.
I really admire how the first guy didn’t let his disability hold him back. He’s educated and works, plus he goes out and enjoys life with friends and family. That is amazing! I love your honesty and pure reactions to these videos, thanks Doc!💜
@卐-Lakehuntist-卐 dont give this guy attention hes just a troll
@卐-Lakehuntist-卐 bro u are a bad person.
I have the same condition as the first person (Arthrogryposis). The doctors were able to work my head back to a somewhat normal position (I can still make it go all the way back, just not quite as much as him). It was very interesting to see the similarities between us. I cannot walk like he can, but I use a wheelchair and am overall slightly less affected by it. There are other people I know with the condition that are much less affected by it. Unlike him I use a chopstick in my mouth to type. I am currently in school pursuing a computer science degree.
I also have AMC
that’s really cool about you pursuing a computer science degree! my boyfriend did it as well and it was definitely a challenge but he enjoyed it! i hope you enjoy it as much as he did!
How rare is this condition? Do you know a rough estimate of how many people have this condition world wide?
Amazing! Keep at it! Life is what you make it!
How useful have you found the recent advances in speech-to-text, predictive texting/autocomplete, etc?
Claudio is a freaking INSPIRATION. Him having such a strong mind and not saying “I give up, this disability is crippling me and I can’t do anything” is so admirable.
It should also be ok for him to say that, to not be able to function. Often people with disabilities are pushed beyond their limits because of ableism.
@@mchlle94 I know that but what I am saying is he didn’t give up on himself which, unfortunately, a lot of people do.
I'd personally go out with dignity, no one ever suffers from all of those diseases in the video. Feel for them.
Claudio is awesome, and his family is awesome. amazing how resilient we can be when we have a strong support system and feel cared for
I'm honestly not sure how much it's actually an inspiration. Really, what choices does he have? He could live on disability and have a boring life of homebody vegetable or he suffers people, but is employed with severe disadvantages and helps his family. People think that living on disability wouldn't be bad, but it's so boring and dull and people think that going to job is not great, but if alternative to that is doing nothing at home, then it's relatively better. So I actually doubt that it's "strength" rather avoiding boredom and guilt and doing everything within his power against that.
Hearing doctor mike talk about how biking is hard made me so happy. I felt so proud of my dad, he's not only a successful paleontologist at a museum but also training to be a cyclist, he's been to two Leadville 100 races while managing a good family life on top of that.
your dad is a rockstar! hope his races went well
Biking isn't that hard(ive driven bikes for 10+ years)
I would like more doctors to be like Mike, he’s understanding and sympathetic, I have had horrible experiences with doctors yet seeing professionals like him give me hope
Edit: Woah, I am in complete and utter shock to see the amount of likes, thanks a lot 💜 take care everyone 💕 and to the ones that feel pain, discomfort or suffer from any illness I do hope you could get better soon ☺️
Same. I’m chronically sick and am getting close to giving up on doctors, they don’t understand or care if all my tests are normal even if me I’m very clearly sick and struggling
@@kaylee1769 hope your get better love
Same here. I could not get a diagnosis for 14 years because doctors were always dismissive.
@@beautifulsongs2385 thank you
Agreed he’s so kind and supportive
Seeing people have these painful conditions makes you grateful for what you have. I feel for them.
Same
There he is! Eyyyyy!✨
Disabled people don't exist to make you feel better about yourself 😳
Same
I agree. That’s the first comment I’ve seen so far that addresses the subject content, and not just adoration for the doctor.
i love how real and honest you are. many people would just sugar coat things but you don’t and that’s awesome. thank you so much for everything you do❤️
I agree with you
What’s sugar coat?
@@raspberry7980 like not telling the full truth or lying about what you’re saying
Agreed
great
My brother has the same condition as Claudio, but it affects mostly his legs. We are also from Brazil. It is a very rare condition, and not many doctors know what it is, my parents were lucky to find a specialist one day and he was the one that explained what it was, but before that other doctors broken my new born brother. Right now he is 32yo, and can walk with a cane, and graduated in law school.
Que bom cara parabens para ele
muito bom ler que as coisas estão indo bem! uma questão: o SUS auxilia em casos raros como os do Cláudio e do seu irmão? espero que sim!
Tell your brother God bless him
só bilíngues KAKSKSK
my mom has a really rare form of lukemia, miloperilitive neoplasms, doctors dismissed her for years but one diagnosed it!! I’m happy the people in the video got treatment or just support!
Sending positive and healing vibes to your mom. ❤️
Hope everything is okay now
Leukemia*?
I think you meant, myeloproliverative
I have one too. People ignored my headaches and dismissed me for over a decade and told me it was all in my head and if I treated depression, my headaches would go away.
Congrats on reaching 10M! I am a doctor in the Netherlands (recently graduated) and I am working/doing research at a genetics departement. You said getting a diagnosis is mainly for research purposes, but that is not the only reason to perform genetic testing in such a rare case! It could be benificial for parents or other family members to assess the chance of having another child with this condition. Also, a diagnosis might provide a better prognosis!
@卐-Lakehuntist-卐erm what
Lakehuntist=🤓
Yay 😃 I’m so excited 😆 have you been in a different class this time for the past two days I’m just going on and I’m sad 😢 not even in a good 😌 I am not going for the last time you are in a good 😌 I hope 🤞 can do that and love 💗 bye 😘
@@TheLowlyApprentice huh
Im from the Netherlands! Congrats on graduating! I have a genetic disorder which is not viable for genetic testing! If you’re ever curious or want to know more, please get in contact! ❤️
I read an article about a woman with the sexual arousal disorder. She said it didn't matter what she was doing; she would just randomly have orgasms. She said that one day at work, she experienced about 25 involuntary orgasms within the course of ONE HOUR. What's annoying is that when she first tried to explain to her friends what was going on, they'd just jokingly say, "I wish that would happen to me!" Um, no, you don't. Multiple orgasms sounds like it would be amazing at first, but after just a little while, that has to be exhausting.
Constant muscle contractions sounds like being electrocuted... uncontrollable, painful, and exhausting.
Awful. Poor woman.
I agree. It also sounds really messy. (Not trying to be silly, gross or insensitive when I say that, I don’t know how else to put it).
Thinking about this and most people kinda forgets that over stimulating may actually end up in pain
The people saying they wish it was them are so rude tbh :/
One of the best qualities of Dr. Mike, besides his sense of humor, is his compassion. I’m glad he is active in the medical community and can advocate for patients.
I love how he is just fascinated by these odd diseases, and he doesn't have any reactions, like laughing or ew thas gross or anything like that, he isn't judging them at all and I love that about Dr. Mike
ofc he’s very nice and everything about it , but you also have to understand that they teach you in the healthcare field to not make faces or react, in all aspects of the medical field. He’s probably a pro at this point.
Also just basic human empathy and kindness.
It's a sign of maturity and respect more than anything, that tends to come with age... hopefully.
0
@@autumnelizabeth4755 not all doctors and medical care professionals are like that
On the topic of the first guy “not hurting”- I live with very severe chronic pain (severe full body CRPS) and have quite a few friends who also live with severely painful conditions. I’ve noticed that the people who were born with their conditions didn’t think the pain was that bad… until someone gave them strong pain meds. Then they suddenly have more energy and become more mobile.
One friend told me that because all she’d ever known was pain, she didn’t have anything to compare it to so she assumed what she felt was normal. Once she got on pain meds, her quality of life really improved.
this is precisely what i was thinking but along the lines of how constricted his breathing must be without him realizing it. like even if he doesnt experience direct pain from his condition, i cant imagine his breathing isnt difficult. i have cf (cystic fibrosis) and one thing cf doctors always tell our families is to breath through a straw and thats what its like breathing with cf. but for me, its all ive known so i cant even imagine what its like to breathe normally for someone with a healthy lung function.
Exactly, I kept looking at him and thinking "How is he not experiencing ANY pain?". I have a chronic inflammatory illness and experience pain on a daily basis; so it seems impossible for someone with that much skeletal and muscular damage to be completely pain free.
But you're absolutely right, when you don't have anything else to compare it to (either because someone was born with the condition or the person gradually became unwell and just forgot what being healthy feels like) your frame of reference drastically changes. People will comment on someone's impressive pain tolerance...but for them, it's just life.
@@milannoelle1576 Excuse my prying curiosity (and you are of course, under NO obligation to reply). But would your condition allow you to be put on a list for a lung transplant? Would that even help? Or would the condition only damage the healthy lungs too?
@@Panda72021 I'm by no means an expert but I've seen some cases of people with cf getting lung transplants and it does help. Cf is a genetical condition that causes the cells in your lungs to produce more viscous mucus, making it so that you can't cough it up as easily. If you transplant a healthy lung that does have the enzymes needed to produce healthy mucus, I can imagine it would help. Wether or not you're eligible for a transplant does depend on the severity of your situation though, since there aren't enough transplants for everyone with cf. If the condition is under control with medications, you probably won't get/need a transplant. (just to be clear, this is general information, I know nothing of this specific person's condition and the severity of it)
I was having a headache 24/7 as a child and thought everyone was the same, so i ignored it, after getting treatment it was a life changing experience
As someone with a noticeable disability- I almost cried hearing Dr. Mike speak out about the way people treat disabled people and explaining nearly flawlessly how how we want to be treated- it is honestly just-- amazing. I couldn’t have really said any of it better myself. I feel heard and valued and validated. Thank you Dr. Mike! You’re a smart man haha
Sadly, there are Karen’s out there who think it’s their job to police things like “why are you parking in a handicapped spot” because “you look fine to me, what is your so called disease/disability??” 😤
@@marquisdelafayette1929 yeah and the sad truth is a lot of people DO park in the handicap spots who should not be there. But you should never assume. Thats why it’s important to look for the plaques or plates and remember to use the plaque if you have one. It won’t stop karens from being karens, but yk
"Just cause you can't see it doesn't mean it isn't there." - Chester Bennington
I'm disabled. I struggled with this for many years, and still to some degree struggle. I'm visibly disabled, but I can hide it if I want to, and often do, as people treat me differently when they notice.
Some people get nasty, but even people trying to be nice often end up treating me, a grown a's man at 6'6 (200cm) as a child suddenly. Nothing changed, except their behaviour towards me.
I appreciate people trying to be inclusive, and I hope they treat others that need more help the same way, but just because I became disabled in my teens in an accident, it does not mean that I'm suddenly lobotomized.
Keep your heads up! You should never be disappointed in yourself, since even when you feel tired, worthless, angry, upset or feel like self harming, just know that I am proud of you, I'll never judge no matter what you do, and there are tons of people like me who doesn't give a f' about your past, your crimes, your condition etc, who are just happy to be friends!
Stay strong!
You too have played a role in the spreading of this message with your first person perspective. We cannot make people do anything (nor should we try, who are we?) but we can continue to model the important things to the world around us and hope we have an impact. Your voice can make a difference.
Case of Claudio is kinda wholesome. His family is golden.
He is healthy despite his condition because of them, and he is able to give back.
Shows how having a healthy environment and supporting family goes a long way.
I just really appreciated how he handled, and spoke about, the lady with persistent arousal. He was so respectful, and you could tell by the look on his face that he had genuine interest in learning about it. Like a lot of people, I also appreciate that he was honestly frustrated with doctors who continually dismissed her. I have chronic pain, but there’s no way to “see” that it hurts. I have to rely on doctors who trust me. I’ve been very lucky the past 10 years.
For the man in China with facial tumors: actually, the doctors DID reach out across the world, and spent a year asking for help.
But they found out that although there have been other patients documented with similar illness, none of those few people were ever operated on, so no helpful feedback was given.
There is another man in Hong Kong, "The half bent man" who had similar issue as the 1st story, of the guy with his head backward and upside down.
That man in HK was bent in half, forward. So his head was upside down in between his legs, facing backwards.
The did operate on him, and is able to get his head facing forward again, the correct way.
@dixia xie ?
@@Emily-tw4bn It's a bot
I was wondering if the half-bent man had the same condition! His story was incredible
@@carelsby you're right, it does seem like the same condition!
How do I find everything hk related bc I am a Hong Kong person, yet never heard of this? I’m glad he is able to have his head facing the right way again though
The first one really got me because you can see how this disabled man lived through all of this and his doctor said he wouldnt live for 24 hours he proved them wrong. This can show you can really do anything.
I was surprised he didn't say not all doctors get it right. I wish @drmike would've spoken on why doctors give such a preliminary negative prognosis.
@@Tweetyresm Other than what doctor Mike pointed about being location, I'm going to assume medical cases such as the one displayed in the video is very rare. So, there might not even be that many documentation on it let alone a way to cure it during during infant stage. But what do I know, I'm not a doctor.
@@Tweetyresm it’s not negative, it’s realistic. For this one man who survived, how many babies with similar deformities died? Especially since the doctor is diagnosing based on visuals and not genetic testing or anything like that.
@@Tweetyresm it's easier to give a parent the hard truth that their baby may not survive rather than give them false confidence that things are okay and then they don't turn out that way
Well, sometimes and to certain degree.
100 orgasms a day. That’s insane! I hope she’s able to get relief with the treatment
I was born with a super rare genetic nerve condition called "Hereditary Neuropathy with Liability to Pressure Palsies" or HNPP. About 1/50,000 have it, but many of them don't know they have it because of mild symptoms. Basically, I am missing a gene that protects my nerves, so if I rest in a way that puts pressure on my nerves, it can potentially deal permanent nerve damage. Aside from that, a ton of random Neuropathy happens. Sometimes I will have a really annoying crawling feeling on my back for hours at a time, if I stand still for more than like thirty seconds then I get terrible itching in my legs, and so many more random things like that. I got it from my mom who got it from her dad. I'm one of the only people with HNPP who found out they had it under the age of 21. I'm 15, so it can actually be a problem when participating in physical activity with friends or in class.
EDIT: Thank you guys for all the amazing comments! I did not think my comment would blow up like this! I figured I would give more insight to the condition. The neuropathy usually isn't too bad. It can be annoying but it usually only prevents me from doing yard work or sports. Also, this condition is currently incurable, but a few doctors around the world are working slowly on a treatment to help nullify the effects. For me, I got lucky with milder symptoms, but if I'm not careful I can make my life much more difficult later on by damaging my nerves. My mom has it pretty bad, but some people later in life can have it so bad that they are practically paralyzed with pain and nerve damage. I am so very grateful that it hasn't happened to me that way. Most doctors actually don't know that this is a disorder that exists, and my mom had been misdiagnosed before going to a specialist for a second opinion and finding out what she had. Due to the minor neuropathy that I had, I decided to get tested for HNPP and tested positive. Another little thing about HNPP is that I actually can't go into the military in most cases. That's just some extra info on the condition. Thanks again everyone!
habibi
I’m sorry friend that you got that I hope one day we’ll get a way to help lessen or ever completely get rid of it.
Hii, I'm 16 and although not as rare as HNPP I have CMT (Charcot-marie-tooth disease)/HMSN (hereditary motor and sensory neuropathy) I can relate to you a bit. I have great difficulty with getting physically active with my friends due to my condition
Perhaps you might find interesting the UA-camr Jessica Kellgren-Fozard. She also has pressure palsies, along with EDS, and she is a disability activist and educator. There is a series on her channel about her disabilities and navigating life with chronic conditions that you might find helpful and encouraging.
I get that crawling feeling, especially in my legs. I can't stay still and it drives me crazy. 😟
Seeing the last woman say that doctors would dismiss her condition, really hit home. I've had doctors who (at the time) couldn't figure out why I was losing weight rapidly, so they just dismissed it as an eating disorder. It's really frustrating and disappointing. But I'm glad there are doctors out there like Doctor Mike :) gives me hope.
They should have looked into it more. Rapid weight loss is very serious.
did they at least try to treat the supposed eating disorder?
What ended up being the cause of the weight loss?
Did they ever figure it out? My docs couldn't figure it out when I randomly lost a lot of weight. We ruled out cancer and other serious issues. Their best guess was female athlete triad.
Rapid weight loss can be caused by a thyroid disorder- and as someone with one I can say that it's apparently not common knowledge. I had symptoms for years before I finally got diagnosed and started getting treated.
Hey Doc,
Regarding the second person and his athletic pursuits. The Paralympics are separate from the Special Olympics, as the Special Olympics specifically includes intellectual disabilities.
Also, when they are speaking about classifications, they're referring to IPC disability class. There are specific disabilities (and the severity of those disabilities) that separate athletes into similar groups to create fair competition. Because his condition is so unique, it's difficult for the IPC to say what classification he could fall under.
My job involves working with many of these athletes. Many of them have struggled with classification, having to jump through many hoops to prove their conditions. Many of them also require medications for therapeutic purposes that are on the Prohibited List (opiates, glucocorticosteroids, diuretics, etc.). This requires even more documentation to show they aren't cheating their competitors by taking their medicine.
Honestly, I don't think the everyday person realizes all of the struggles these athletes face that goes well beyond their disability. Truly strong individuals. If you can, you should invite a Paralympian on your channel, as I'm sure they could teach people a lot about what it takes.
Contact him, try getting in touch with him, even a Zoom talk or anything. We need education
Commenting to boost your comment so Dr Mike hopefully sees this!
It would be a great idea if he got one on the channel
I might be completely wrong in saying this, but just a quick question. Since he struggles a lot to keep fat on his body due to his condition, can it harm him in any way to exercise as much as he does when cycling due to the fact that it causes people to loose weight or am i just misunderstanding? Its obviously amazing what he is doing and hopefully inspiring to other people who might have the same condition, I'm just very curious and don't mean any harm by this comment.
I have been trying to get classified for 5 years as my disability is hundreds of other one not one major disability.
I have cerbral palsy a few slipped discs and nerve damage, and Dr Mike taking about health issues openly is so refreshing, when ever I meet someone new quiet often they are scared to asked me how my condition effects me or just worried that it will come across the wrong way, and I feel as long as they are comming from a place of compassion or well meaning that fine
Nerve damage sucks! I get weird stress induced cetaxia sometimes also live disabled and stress hits different
Dr. Mike, I’m currently a pre-med student studying biochemistry. I want to say that I love your professionalism and attitude toward cases like the first one shown in this video. It inspires me to be the best person and future doctor I can be. It’s so easy for people to look a someone with a difficult physical disability and count them out, but you encourage his support system and autonomy. I always learn something when I watch these videos. Wishing you the best and I hope you see this! Thanks for everything, .
You should look into specializing in EDS and collagen disorders!!! We don’t have any specialists (barely) and need help 😭😭
I wish you the best! ♡☆
well am no med student but am studying biology and am taking biochemistry at the moment
took a test today to be exact :)
Good luck Nico, you can be the difference in the world we need and I can tell you will be fine.
"pretending that something unsual is usual for your own discomfort" SUCKS! I have a facial deformity and I hate people acting like it's not there or trying to assure that "you can barely see it". Dr Mike is completely right! I know and everyone else knows that my face is massively asymmatrical and there are enough people out there pointing that out to me. Do not invalidate my feelings and my appearance because you don't know how to handle people looking different.
I understand what you’re saying, and I will keep it in mind for the future. But maybe don’t be so harsh on people trying to act like it’s not a big deal. Personally, that’s what I would’ve done before reading your comment. Drawing attention to something I would assume you get enough for already, isn’t something I’d want to do. I would think that bringing it up or saying something might make you uncomfortable, and I wouldn’t want to do that. That’s just my two cents from the other side though, I understand how it could be frustrating, thank you for sharing your feelings💕
It’s not that we don’t understand it, but honestly what are we supposed to do meeting people with a disability because by me acknowledging it can make them feel worse and if I don’t people also get upset and frustrated so it’s just easier to go the separate way because it doesn’t matter what you do your defined as a horrible person if you treat them as usual or unusual
There are people who want people to talk about it and acknowledge their condition and there are people who don't want you to acknowledge it and talk to them like you would anybody else. I have medical conditions that forces me to have to use a cane and wear braces on my legs at a relatively young age and I would prefer people to ignore it and treat me like they would anyone. If someone with a condition wants people to address it they should bring it up so people know that's what they want. It's rude for somebody to say something about somebody else's appearance.
@@ohionative5237 I appreciate your insight as well💕
I've been invalidated by almost everybody in my life. When I first got sick, absolutely nobody believed me and decided that I was a) lazy, b) faking, c) depressed and of course I just had to be a drug addict because I took pain meds. I wasn't diagnosed until I developed Epilepsy from being assaulted. I have Myalgic Encephalomyelitis. To this day I still have to act like I had severe depression and addiction just to be able to talk to certain family members. But when I found my most recent doctor and they thoroughly investigated my history, including medications and mental health problems, I was so surprised to be told by another person that I have always been responsible with my medication, according to my refill schedules and that my medical records state that I showed no signs of addiction. Dependence? Yes. True addiction? No. I was also told that after looking through my medical record history that I didn't start to display any depression until I was accused of being an addict and my entire family deserted me. I was left with absolutely no support system, knowing that I was physically ill and not believed.
Being validated, being seen and being believed can make a massive difference in not only somebody's life but in their medical condition as well.
If you are unsure about how someone might respond to your questions, ASK THEM THAT. Just quietly ask if they are ok if you ask some questions because you want to be able to treat that person with dignity and respect. And as the person who is being questioned, don't get snobby, snippy or flat out furious. Recognize and respect the questioner as well. This is a teachable moment, even in kids. Teach your healthy children how to be respectful and understanding of disabilities and illnesses and teach your disabled/ill children that not everyone is out to make fun of you, that some want to know things so they know how to respectfully be around/with them.
This is actually a teachable moment for adults as well, now that I think about it.
I have a rare chronic pain condition called complex regional pain syndrome (CRPS), it has been studied and named the most painful chronic condition in the world. It can cause problems with the muscles, bones, tendons, blood vessels, skin, organs, etc. It can spread throughout the body as well. At the beginning of my journey with CRPS I only had it in my right hand, arm, and shoulder. The pain was so excruciating and unbearable that I was going to the ER multiple times a week because I didn't know how to handle the pain. My fingers were stuck in a fist so tight that my nails went through the palm of my hand and the shoulder has developed frozen shoulder more than once. I used to take pain meds, I was taking max doses of 5 types of meds 3x a day every day for months but they couldn't even touch the pain. I've had 3 nerve blocks into the bundle of nerves that supplies nerves to my right arm and I can now use the limb again. In October I'm planning to have a spinal cord stimulator implanted that will hopefully scramble the pain signals created by my nerves before they can reach my brain - hopefully helping greatly with the pain. The CRPS has now spread from my right hand, arm, and shoulder to now in my right hand, arm, shoulder, right side of my chest, back, and neck, right cheek, right side of my lips, right side of my gums, and right foot
I'm so sorry, Erin :(
That’s interesting that most of the pain is on the right side of your body. Did the doctors give an explanation as to why this is?
Jeez, that sounds more painful than trigeminal neuralgia (usually accepted to be the most painful disease).
God, I hope you get healed very soon.
Uuggghhhh that sounds unbelievably awful. I'm so sorry you're living with this and I hope the new treatment helps.
My family has a medical history that isn't all too great, and knowing that people like Doctor Mike acknowledge rare diseases and such, makes me feel better about the fact that if I inherit anything unpleasant when I grow up, there's at least some people in the world who are willing to help.
Great how Mike is so honest and respectful. He gives insight without disrespecting the people with these conditions.
@卐-Lakehuntist-卐 No
Except calling the Paralympics the 'special Olympics.'
Nearly.
I really appreciate you telling people it's ok to identify when someone is different and it is ok for them to identify how they feel if they don't feel different. The most important thing is that we are all kind and we approach everyone with kindness and respect. Thank you being so respectful and spreading good/reliable information when the internet can be full of incorrect and misleading information.
But they are not different, they suffer from deceases.
@@grgamer8470 explain what a deceases is cause Ik what deceased is, yk being dead. So is deceases being multiple deads? 🤔
@@grgamer8470 but on a real note most people that ik that suffer from something that makes them noticeable different from what the average person looks like on the outside knows that they are different. It's ok, its not a bad thing and it shouldn't be treated like something we should be afraid of or afraid to be around. We need to make it a more comfortable situation so that Noone is afraid to be in public for fear of being stared at or made fun of. Thats my point. When we see someone different and look away or don't make eye contact that's way worse than just being normal like we would with anyone else. And teach our children the same, to be kind.
@@fawndesilva1607 i didn't mean in any way to treat these people like they don't exist or in a more negative way but to try to push out mechanisms to innovate treatment for every decease. And most of all to improve as human civilization. Most of the bad things like cancer etc are outcomes from our activities.
@@grgamer8470 disease. Dis ease. I think English might not be your first language, so this might help. Deceased means dead.
Is a disabled person, Dr Mike, I really appreciate you treating this like any other video. You aren’t getting “shocked” and playing it up when a new person with a new rare illness pops up, and you can tell you genuinely are just curious, but care more about the person than “getting to the bottom of this illness” and seeing the person. You’d be SHOCKED at how many Drs don’t care, and treat you differently when you aren’t “normal and healthy.” Though, you may not be shocked since you probably deal with it just as much as I do lol
Your compassion, empathy and non judgement of these poor and beautiful souls almost made me tear up, wish there were more people like u in the world, let alone more doctors like you ❤
This was really interesting. The guy with the facial tumour looked so much happier after the surgery. People often judge things like this in a negative way and often don't understand the impacts it has. Was good to see a medical viewpoint that embraced that people will likely react a certain a way initially and encourages them to find out more about the condition.
Couldn’t have said it better
A lot of people with my condition get harassed because how we look, especially because some people mistake it for monkey pox.
Try going about your business with a couple of weighted blankets over your head for 15 minutes. It wouldn’t even come close to what this guy has to go through.
@卐-Lakehuntist-卐 Lmao, your username doesn’t have a swastika in it, it’s a Buddhist sign
@@sunshine3914 Yup for sure, i respect him majorly for enduring such a thing. But i am glad they were able to remove so much of it to where he can live a better quality of life. Maybe one day they can help him more :) science is going further and further each day.
I had HS since I was a kid and although it's not a rare disease, I wish it got addressed more. I'm glad that Dr. Mike stated to treat others with empathy because people judge too quickly without really understanding what their condition limits a person to do. For example, I've been told from men/women to shave, but I cannot since it could add to my boils. If you read this, please be kind to each other
Fellow near-lifelong HS sufferer here - it's so incredibly tough to navigate life with it (the sheer pain), but it has given me so much more empathy as a medical professional. Hang in there friend.
@卐-Lakehuntist-卐 cap
I am sorry to pry but what is HS?
@@joelmana1711 dont even interact, just report. they've been spamming this shite under a bunch of videos
@@niaharmes9256 don't know the actual full name, but I'm pretty sure they're referring to acne inversa? it causes painful lumps on the skin that hurt a lot and break open. there's not enough studies about it, so its difficult to treat and usually lasts a very long time
I like that you mention that sometimes a patient knows more about their own condition than the doctors do. I have been diagnosed with Gastroparesis. It’s not extremely rare but it is unusual enough that there are very few doctors that know anything about it. I’m in a support group with over 40,000 members and almost all of us deal with issues of sub par medical care because we can’t find anyone that can or is willing to help us. We get blown off a lot.
Dr.s are still people. Med school makes them educated enough to help with most things, but it doesnt make them infallable knowledge Gods of medicine and physiology.
@@TheDocbach Doesn't have to. It should still also put some focus on empathy and teach them how to do some research for their current patients. No one needs to know everything but they could be able to get at least some degree of information about diseases they don't know about. At least when they have a patient with it.
That's usually where they refer you to someone else. Likely a specialist if they actually care for you. The physicians who gave up on the colored lady also reveal a huge gaping problem. Physicians can judge your needs based on who you are and even your skin color. It shouldn't be that way, but it happens all the time. John Oliver did a whole episode on just that issue alone.
What are your symptoms if you don't mind my asking? I have wondered if I have it. After years of starving myself and not having gut sounds, throwing up because it feels like I'm not digesting anything, fatigue are just a few things that may be signs of it but both doctors have dismissed me. I'm fat and they didn't believe me that I don't eat often.
@@kimberlydlapp3441 started off with excruciating abdominal pain. Couldn’t keep any food or drink down. Lost 45 pounds very rapidly. Constant nausea. Diarrhea. Bloating. I had a gastric emptying test done and that’s how I got my diagnosis. I can only eat very small amounts of food at a time. Very limited diet. Malnutrition.
God bless Claudio. He's such an emotionally strong person for never giving up and staying positive and pursuing his dream of being an accountant. Sure he looks different but he has a kind soul and a warm heart!!
Well his world really went up side down
@@RAJ00014not funny
I have a severe form of Crohn’s disease, and spent many years of my life Severely underweight - slightly less severe than Tom, but in a similar range. I personally loved people asking me about my body and why I looked the way I did. It made me feel valuable. What hurt was when people would avoid talking to me, because they felt uncomfortable around me because of my emaciated condition.
My favorite magician, Dynamo, has Crohn's. Really skinny dude. I remember he was hospitalized for a while, and the medication made his face look puffy and chubby. Wild stuff. Anyways, from an internet stranger, hope you're doing ok.
I have severe Crohn's too but as a kid/teen ppl just assumed I was anorexic which wasn't super fun
how are you doing these days? I hope you're well and in remission. I had IBS so painful they thought it was Crohn's but negative, though I can relate to the pain and life changes, debilitating. I love someone with Crohn's so pray he and everyone suffering from it find peace in their body and mind as soon as possible. that being said I've heard good things about many kinds of psychedelic therapies helping put even the worst cases in remission! you are beautiful, you are loved, you are valuable, you are worthy and most importantly you are enough, you do not need to do or be anything more to be valued as you are, and you are not responsible for anyone else's happiness! ☺️
❤️🙏❤️ God bless
my ex has crohns and i remembers him always talking about how he is in pain and how insecure he was of his weight. i understand how you feel and i'm glad you're able to feel proud of it
I was just diagnosed with Crohns back in August. Its been pretty rough as Ive been dealing with great pain, but a good support system has helped greatly physically/mentally. Weight loss Im dealing with as well, but my Dr.’s arent too concerned.
It’s amazing to see such an empathic and non judgmental person. Doesn’t happen quite often after many experiences whether that me or my family where they are dismissed. He truly tries to help ppl or be more knowledgeable about the situation. Thank you Dr. Mike you have once again restored my faith in doctors, that are some just like you!
I ❤Dr Mike's emphasis on understanding and empathy! As a doctor myself, I love learning about rare conditions. But for them and every single patient, I try to think of how they feel, how they cope, and how they can thrive. We can only be great medical professionals and become better as a society if we CARE about and try to UNDERSTAND what other people are going through!
0:23 I will never complain about my aches and pains ever again. This man is an inspiration.
I love and appreciate how you find dismissal in the medical field disappointing. As woman with chronic condition, I'm pretty used to it, so my reaction is "Yeah, sounds right."
I've had chronic digestive illness since I was 13 and have never really been treated for it. Every doctor insists on trying proton pump inhibitors, ignores when I tell them I've been on them before and they make it worse, then just to prove it I'll take them until my stomach stops functioning and I'm forced to stop so I don't end up in the ER, then the doctors just shrug and tell me to just deal with it... Whatever this condition is exactly (best I've got is IBS but it's got some differences that makes me think there's more to it) literally robbed me of my adolescence and even stunted my growth because I couldn't eat enough
I hate it when your doctor ignores you when you tell something is wrong. I got hit by a car 6 years ago and have been fighting for proper medical care. I wish I could see a doctor who cared
@@vaughnhaney7020 SO HELP ME GOD you read like you've got Crohn's Disease... It frequently gets misdiagnosed as some generic inflammatory bowel issue or other (or just "Inflammatory Bowel Syndrome" which is essentially Dr-ese for "yeah, it's f***ed and we have no idea why")... AND it's regularly diagnosed in teens when they miss the adolescent growth spurt(s), thus stunting growth...
If you haven't, seek a Crohn's literate doctor... You can find a decent read on Wikipedia, which mentions a few other "related" G.I. tract issues, syndromes, and disorders you might also ask about (in case they manage to dismiss Crohn's)... It might also give you some inspiring questions to ask on your next phone call(s) and visits...
GOOD HUNTING!!! ;o)
@@vaughnhaney7020 i have IBS and it can be terrible, but I would look into IBD if I were you. It is similar to IBS but generally is a more serious and chronic condition. I hope you can manage to find relief for your pain if you haven’t already!
It’s so frustrating when they do that it’s like hello hi it’s my body I know it I know what feels right and what does it
I wish had Dr. Mike as a primary here. The entire medical field can learn a lot from this man.
I find a lot of DO’s are like this. I used to work with a DO and it was like night and day working with her compared to a lot of the MDs. Still doctors, still on the same level, but DOs have a lot more education and training in treating the person as a whole
D O is the way to go!
Amen, health is holistic. Not just about the body but the mind and the spirit too - I have seen first hand many things that prove it beyond this beyond all doubt and a cursory intellectual consideration of the human as an organism can surely only lead to the same place? Would you change the tyre on you car but leave the fault in the wheel bearing causing the tyre wear or damage another component getting the wheel off or put the incorrect tyre on as a replacement? And that is for a simple machine, let alone a compex human being.
The entire world of medicine can learn a lot of Doctor Mike
@@bearsbeetsbattlestargalactica6DO’s PA’s and NP’s have always proven to be more attentive to me!
I’m a genetic counselor and I think it would be cool for you to do a video regarding the importance of knowing your family history for hereditary conditions, especially regarding hereditary cancer syndromes!
Being a genetic counselor is my dream job that I’m studying towards
I agree. Now just how rich do I have to be to get this needed information?
Also would my results based off white people's baseline? If so that's not gonna work for me being black. Our genetics are very different.
I have a genetic disorder and it was so hard to figure out what was going on because that side of my family has several question marks (my grandmother’s father was unknown being a major one). I keep track of what I can!
@@hawkeyemadi yesss I would love to know how to do this
This is a first for me. I named Carlos' condition in 5 seconds. My daughter (now 39) was born with it (AMC). A note on intervention: In 17 years there were 17 major surgeries to improve functions. In each surgery she gained something, and lost something. . It is extremely difficult to determine if the balance was worth it. She has been using a power chair since she was 3, but she was well on her way to walking before the 8th surgery, which left her with a fused and painful ankle, She is doing OK now, she has a Master's in experimental psychology, and is working as a government social worker - her choice of a dream job - but she services her clients exclusively from a power chair. This level of support had me carrying a quarter million in medical debt for nearly 30 years. Believe it or not, medical insurance spent more than I did. We are still paying off the student debt, but heck - who isn't? Really great video.
I have arthrogryposis as well i have had 35 surgeries and im 38 yrs old i get severe pain but i live on my own as well but require home health
Congratulations on your persistence. What you are doing isn't easy.@@kassandraahuero7962
My grandma and father both have neurofibromatosis! Theirs isn't nearly as severe as the case you showed but it's awesome to see these rare diseases brought to light when they affect someone close to you.
There is a type 3 that most don't know about because it's classified as a Rare Disease called Schwannomatosis my grandma, my mom and me suffer from it. However the most affected is my mom. :/
My son has neurofibromatosis type 1. The most common rare disease.
i have NF as well type 1
I also have type 1 nf
My sister-in-law passed away years ago because of neurofibromatosis. She unfortunately had lumps on the outside of her body and inside her body and it sadly took her life when she was 45. It caused her veins to slowly leak and eventually took her away from us. It is such a sad disease.
It's so refreshing to see a doctor who actually cares. My doctors have always ignored ores me and my issues. Now it's at a breaking point and I finally was able to get some answers
The only time I have experienced doctors who actually care and give good service is when I travel to Africa. It's not what you think. Because so few Africans can afford to see a doctor, they're not overworked. That's why doctors in the West don't care. They're worked to the point where they don't feel human anymore. There has to be a balance.
People ignore some facts about how it feels to be in the doctor's shoes and how sometimes patients are also nothing better how they act sometimes. People, expecting from them like they are machine as they need to do everyting while people are still going back to bad habits so ignorant people can be. Too much hate for doctors and too much love for streamers or youtubers or sport players
I agree with all of you also why is this comment to underrated??
Me with my left knee.
Ultrasound.
XRAY.
MRI
But yet funny how nothing comes up.
Kinda like there trying to milk to most profit from a injured person 😇
With the first person, I’m surprised that he doesn’t have breathing problems. I have scoliosis and I have bad asthma. My curvature is just bad enough to aggravate my asthma. I couldn’t imagine what Claudio’s lungs go through.
Think you’re body gets used to it so long as you don’t already have lung problems. I was a 75 degree S curve before my surgery and I didn’t have any limitations
He says he's lived pain-free for as long as he can remember, which is unthinkable.
i assume its going to be hell for him to breathe if he ever caught a cold
I love how he doesn't judge anybody like he acts so normal it's so amazing to see him understand and not judge
The disease I have is super rare. Out of all the people on the planet who have kidney disease get only 7% of adults get this and only 4% of kids get affected by it. My doctor used to call me a rare bird which i thought was sweet in a weird way lol. It’s called MPGN II. Im 31 and have had this since I was 13 so I’m one of that unlucky 4% of people with kidney failure. I have dialysis three times a week for 5 hours a treatment. Sometimes it sucks because I don’t LOOK sick and people expect me to be a normal able bodied person but I get fatigued really easy. Even my family doesn’t quite get it. Disabilities aren’t always visible.
*I hope this all made sense I didn’t know how to put it into words.
I see why they shorten it from Type 2 Membranoproliferotive Glomerulonephritis to MPGN II
It does. People really have to stop judging the book by its cover. Not because someone looks good on the outside doesn't mean they have no sheet going on in their lives privately.
You’re 100% right. Not every issue is visible.
13 years ago I was diagnosed with Idiopathic Hypersomnia with long sleep cycles. I’ve been like this my entire life. I really only started complaining about it at around 14 years old, but I was 30 before anyone would listen. My mom told me that I once slept 22 hours in a row… I wasn’t yet a year old. She kept calling my pediatrician and checking to make sure I was still alive.
I’m just glad that someone finally listened and I’ve reacted well to non-addictive medication. All through my teens, people called me lazy, accused me of doing drugs, accused me of not sleeping at night…. All kinds of things. Not my family, but most other people did. Just because it’s not something you can see or have never heard of, doesn’t mean it’s nonexistent.
@@MsAubrey TRUE. People are quick to judge maybe due to past experiences, maybe due to them being savage for savage sake, peer pressure can lead to that and many other causes. But when a situation seem to be way to frequent or even just straight up bizarre, people should learn to ask questions, seek for answer. Being ignorant in this era of information is a crime against ones intellect and people ignorantly lashing out at other based on their biased views are just ....🤮🤮🤮
@@Sir_Zombie1ted agreed. Although, when I was begging for someone to listen when I was 14… the internet wasn’t a thing yet. 😂
“It’s not selfish to love yourself, take care of yourself, and to make your happiness a priority.” - Mandy Hale
@Acousticwarnmc i am not a Bot
For me it is CUZ I'M A FAILUREEEEE *soft music*
@卐-Lakehuntist-卐 Elaborate your nonsense. (if not a bot)
@@jajafeedyns8082 it's a bot, i have seen it before, it always says some sh*t
I actually have to feel sorry for Amanda, I can't imagine the state of anyone like her mind had to be in. I hope anyone with that disorder gets the help then need.
I found these videos today, and I've become fascinated
Not because of the medical info, or the things these people go through/deal with
But because you are giving lessons on compassion and empathy, and there's no other class like it ❤️
With Claudio, I was honestly most surprised that he was able to breathe with no problem considering how far back his head is. Guess despite the other deformities he has, that area kept itself sorted so it works with his body shape.
Also, whoo hoo 10M! Way to go Dr. Mike! Keep bringing smiles and good knowledge to the people!
How you?
@@bobbyharness5328 what
Human bodies really are incredible.
I doubt his breathing capacity is normal. It's just that the guy doesn't tax his breathing because either he's laying in bed, being carried, or moving very slowly across the floor.
Well, I presume he did grow slowly into his shape or started like that... if the rest of us ended in that position a short amount of time we'd be quite done for.
It's really interesting to learn about these disease not just in a sensationalist way but also from a medical standpoint.
And we should really appreciate Dr. Mike honesty and professionalism in explaining these conditions.
I love how you just copied and pasted someone else's comment, these bots are ridiculous
@@NemesisFromResidentEvil Thanks. I haven’t noticed those copy bots in quite awhile now.
Off to find the original comment now.
@@sunshine3914 can’t. Way to many
the way he talks about such touchy subjects so gracefully, thoughtfully, and carefully is commendable
As a medical coder I have to frequently code the diseases according to ICD10. It was great seeing Dr. Mike discuss that.
It's wild the differences between ICD 9 and ICD 10! So incredibly specific!
I totally respect all the patients in this video, but I have to admit that Claudio stood out to me the most. Inspiring. He is f***ing inspiring! Some folks whine about how life has been unfair to them, and they're able-bodied people, and then you look at this guy. He is awesome.
He is awesome! But I’d like to point out that it’s valid for able bodied people to complain or whine about certain things. You’re not wrong as there are many privileged people who whine about things. But also this comment can give off the wrong message that if you’re not suffering with xyz, you’re not in a position to whine or complain. Not letting yourself complain freely because you’re not “suffering” enough is a dangerous slope i went down before. It’s very detrimental to mental health. Everyone is the world is allowed to feel their emotions and it’s always valid. Because how you feel is internal and personal. However Claudio is fcking awesome and a absolute champ
@@bananaana1860 Good point.
@@bananaana1860 yea i completely agree. ig OP meant those spoiled type of ppl who complain about anything and everything yk?
He is a champ and has my upmost respect, but let's not put down other people's struggles in life, they may be able-bodied but we don't know what is going on in their lives or if they are struggling mentally (mental health is something a lot of people ignore when it comes to overall health).
@@e.m.rivera8948 Yes.
I love how that specialist broke down the name of the condition so that they understood it and didn't just hear a jumble of random words
We often forget and take for granted just how fortunate most of us are, and videos like these are really eye-opening to that. Major applause to these people for not giving up hope or letting it affect the quality of the life they want to live
I am 12, and was diagnosed 3 months ago with CIDP. (Chronic Inflammatory Delaminating Polyneuropathy) and hearing Dr. Mike say something alone the lines of “if you have an illness your the expert of it” really touched me. It was hard because I didn’t know how to explain the feeling, or no feeling at all really, that I had.
What is that? You dont have to awnser if you dont wanna
Not to be that guy but 12 is too young to be on UA-cam, you could get yourself or the people you watch in trouble.
@@AstralArbourSysMind your business. I was on yt at ten.
@@AstralArbourSysI was on UA-cam at 5. It’s really not that bad for kids to be on because most creeps’ comments and attempts will be blocked, reported or deleted
I know; I have a genetic orthopedic condition that is the sort that even most specialists haven’t seen “in the wild.” Fortunately I haven’t needed much in the way of medical treatment for it since I was a child.
13:50 When I was pregnant, I got this pain across my right side. It felt like a stripe going across my ribs. It felt like nerve pain, so i asked my doctor. He said “You’ll have to deal with it, like everyone else.” It persisted after I delivered my baby, and I wonder if nerve ablation would help me. I will ask my new, better, more awesome doctor. Thanks Dr. Mike
12:13 The "oh wow" 💀.
Wdym
Nahh bro too devious💀
0:13 this will always be a icon
I had genetic testing done recently and got my results this week. This test was done because I am 42 and diagnosed with breast cancer in April. The good news....I do NOT carry the BRCA genes so less worry for my kids. The test checked 77 other types too. All negative. Such a relief.
my mum is 43 and a half now, she was diagnosed at 41, right at the start of COVID, with breast cancer, she had an operation and radiotherapy and was cleared that October, and has to take medication for 5 years and have yearly mammograms, but she doesn't have the BRCA gene too, which was a relief for her as she worried she'd potentially have passed it to me too. Although they say now, 1 in 2 people will get some form of cancer in their lifetime. Which is terrifying. I wish it didn't exist. Causes so much pain and misery to so many 🥺
How are you doing? I hope you are doing well. Sending many hugs to you 💖
I’m so happy for you. I carry the BRCA1 mutation, my mom died at 45 and so did four other of her immediate family members, one after 70 (also immediate), and a 60 year old cousin of her mom’s. I had a preventative mastectomy. Haven’t thought about breast cancer since.
@@chromachan 💕. Oh my goodness I'm so sorry about your mum. When she told me I was terrified, thankfully they caught it early, I can start getting checks and such from around my 30s, I'm 21 now. They did testing, and she doesn't have the mutations, her mum had 3 different cancers before she passed at 38, 34 years ago. So they thought it might be hereditary. Thankfully not. I can't imagine how it must feel knowing you have the mutation and also to lose a parent. Was so terrifying just finding out she had cancer. Genuine fear I had when I found out. Especially after how young her mum was, my mum was a child. There's been a lot of cancers in both sides of the family, but I'm glad I'm aware of it and I'm constantly checking myself. I have thought about a mastectomy, but im finally okay with my breast size and I'm worried about surgery and having them gone. Wish cancer didn't exist 🥺
Again, I'm so sorry about your mum, I hope you're doing okay ❤️
@@kirashields7383 Is that true? That 1 of 2 people will develop cancer at some point in their lives?
You will recover
Jesus christ, the fact that these people are still fighting with their conditions is just incredible. That shows how strong these people are
In the first case, that the family lost faith in medical doctors (as a whole) and refused to return for follow-up regarding his condition, goes to show how important *_COMMUNICATION SKILLS_* are to healthcare professionals. Had they been more open about the limits of their knowledge and spoke with less definitive certainty over stuff they did not know - never mind guarantee - it's possible he and his family could have continued seeing healthcare professionals and get better answers as to what was causing the deformity and/or what treatments or adaptations might be available to him; even if not to cure the condition (which would be unlikely) but to at least improve his quality of life by making things that little bit easier for him to do things.
the first guy must have incredible mental strength. I'm so impressed
I am proud of Claudio. While many others complain about what they don't have, Claudio embraces everything that he has.
This is SO positive. In an age of cruelty and intolerance, you bring us wisdom! Keep up the good work.
for the first guy, it's incredible he can live pain-free, he definitely has troubles due to the deformities, but seems to be able to live well and even pretty independently. so much props to him.
and so glad in the current world there are jobs that require almost no physical mobility, if you got the brains you dont need almost anything else to succeed in life
I love how Dr. Mike is pointing out the different perspectives people can have, like that something is unusual or different and acknowledging that that's ok, as long as you're kind about it! Like we don't have to pretend everyone is the exact same, because we're not, just be accepting
Really feel bad for these people. And the guy that had issues with storing fat really couldn't have picked a worse hobby with his condition.
Whell of it makes him happy. It's better to take risks and live life then to stay stuck at home being miserable. One of my favorite things is hiking and that's not really ideal with my POTS. At any moment It could act up and I can faint it's a risk but I'm willing to take it to enjoy life. You only live once best not to waist away in a basement somewhere
I feel like difficult would be better
6ft3in and 133 lbs is a cyclist’s dream. When that guy rolls up to the peloton to start the mountain stages, the other guys are shitting bricks.
A lot of people would be rude and push that person who is different down but you help people understand and listen. Thank you
I immediately thought of that girl Elizabeth voted ugliest woman in the world because of her condition… people are cruel
Just because someone is different doesn’t mean you can be mean to them!
I wish more doctors were like Dr. Mike. He’s so kind, educated, and empathetic he really cares for the patients and the situations they’re born into amazing video. 💜
I wish more doctors would be direct and firm, not afraid to say what they really think.
I like when they tell you the truth even if it's ''offensive''
@@smashmusique yes you're right. Doctors (and other people) should be honest with others, and tell the truth. However, the way it gets delivered matters also. There are some that are actually rude and might say offensive things. It's best to be kind and empathetic towards others, but also say the truth and fact while avoiding to say the wrong thing.
@@phoenix2.020 sometimes, psychologically, it's best to hear offensive things. kindness doesn't always work. You can be empathetic and ''mean'' and it will be the best for the patient
@@smashmusique I think that's why it's important for a doctor to develop a strong patient-doctor relationship. That way they know and understand you better and can inform you in a more productive matter. Sometimes being blunt and almost offensive in that bluntness will do more harm as it leads the patient to feeling hurt, developing a mistrust and negative connotation with doctors, and then in the end a refusal to visit a doctor again. For some people a kind and soft delivery is best while others do better with a quick and blunt answer.
As a nurse in a Genetics clinic, I both love and dislike the comment that doing genetic testing (to find/confirm a diagnosis) wouldn't likely change treatment. On the one hand, I wish SO many more PCPs had that understanding when referring patients to Genetics (looking at you, hypermobile EDS). But on the other hand, the second patient could potentially benefit from a treatment or metabolic diet that he's not currently on; and wouldn't be put on if he's not seeing a biochemical geneticist or metabolic provider who can evaluate him for any inborn errors of metabolism or mitochondrial disorders. Overall, having a PCP understand that genetic evaluation and testing isn't always beneficial is rare (and that we can't just test for anything and everything), so props to Dr. Mike for that!
I'm happy for the first guy having family support. He would not survive or be anywhere near as successful without it.
I love your genuine attitude to these cases, the way you educate without judgement is really refreshing in a sea of people who will just point and laugh.
13:11 "Your foot can die"
Me: Instantly uncrossed legs because of pins and needles.
Me: instantly crossed my legs cuz I like pins and needles
@@crimsonangle18uh you should get that checked out at a therapist
@@Cane4092 what-
I am an accountant and dislocated my shoulder. I struggled to do my work for weeks as it was so uncomfortable. Mad respect for Claudio. To become an accountant after what he has been through. That is awesome.
I have Neurofibromatosis, not that bad, but I still have it. People with my condition are getting harassed. One woman got recorded and put on TikTok, and was accused of having monkey pox. Thank you for bringing awerness to this.
i hope some day you can get cured for it if anyone in the field of science ever develops a cure, I've researched the disease and it is quite depressing and seems kind of hellish.
Also thank god i do not use TikTok and have a blind eye to it.
I also have nf, also not to that degree, but I have had a lot of issues having some of my nierofibomas removed. Several of the doctors I had seen just dismissed them as purely cosmetic ignoring the fact they caused me substantial pain. Luckily I was able to get referrals to doctors that actually understood that having tumors in those areas would cause significant pain and was able to have them removed. My heart goes out to all those suffering with nf or other disorders that are unable to receive help or get answers.
I'm not sure if I have NF but my mom, cousin, and grandma all had it. It was terrible to watch them have so much trouble.
Mike’s so respectful in all of these videos, it’s so refreshing after all the subtle ableism you see elsewhere
Jesus, what a disrespectful and ignorant comment.
@@loffan In what way?
@@terribleeyesshining he might be a bot anyways
Yeah, especially since someone with Neurofibromatosis recently got harassed and posted on TikTok without her permission. As someone with tho condition, it's nice to see someone being so kind about it.
The guy with the facial tumor- god I feel awful for the dude, I didn’t think any living human could look that way, I thought it was something out of horror games, I actually gasped
I appreciate your professionalism and empathy. Acknowledging a lack of education or finances or access to healthcare is important. You show care, yet explain everything so reasonably.
I have a rare genetic condition, so I appreciate how you handled this.
As a disabled person, I find nothing wrong with “Body Bizarre”. Having healthy, able-bodied people discuss disabled people as some sort of “other”- with kid gloves and “explanations” how to think about and interact with us as if we aren’t just like YOU ALL, and the basic “treat us how you would want to be treated” rule doesn’t cover it all, tho….
Just say that, then model it. Because you know what? Unless you die very suddenly, EVERYONE IS ONLY TEMPORARILY ABLED, and no one knows when and how they will become disabled.
"Temporarily abled" I like that
@@Panda72021
Well duh. You're acting like that's some kind of deep philosophical concept that you have just found accurate. Of course that most people are just temporarily abled, because we are all living our temporary lives. Except for the fact that I've come to discover that when I was in kindergarten, when I suddenly realized that *nothing* in the world is 100% certain, except for the fact that only constant change is the only thing that is absolutely certain in life. I find strangely soothing that lil discover of mine. 😁
@@tia3816 chill
@@hera9668
Read it again maybe. Idk. It's the most chilled comment ever. 😁
@@tia3816 chill
I'm really glad you have so many videos on your channel reacting to all these TLC shows. They need someone to bring some humanity to them and you're exactly the right person to do that.
Its always super important to look at people suffering from these conditions from a place of empathy. Too many people lack that nowadays.
I feel bad for the last story. The young lady. I've heard about it and how others would laugh. I hope she can find relief. Poor kid. Dr. Mike thank you for showing empathy and maturity on these cases. I have seen medical professionals act ridiculous in some situations.
I've had pgad since my early teens. It's horrible, extremely uncomfortable and painful. I haven't found any doctors or gynecologists who understand it well enough. Thankfully I take a medication that causes sexual disfunction so it helps. It wasn't prescribed for pgad it just helped accidentally because of the side effects. I'm still looking for a specialist because I'd like to one day stop the medication but, I can't because of the persistent genital arousal disorder.
This just made me feel better for my daughter. I still wish she had a diagnosis at 6yrs now but we've been managing whatever comes up. We've seen specialist after specialist including genetics. Still no definite answer. It was helpful to hear you say it's more for just the paper side of things.
❤❤❤Good wishes to you and your family! ❤❤❤
your life must suck i feel bad for you