Someone I know has Prader-Willi Syndrome. Her parents made it a necessity early on in her development to understand what is going on with her and to teach her how to successfully live a healthy and full life with her genetic condition. She is such an inspiration to others to learn more about the genetic condition and she has even participated in medical trials to help others like her. Her mother has created an amazing local and virtual community for families who have children with Prader-Willi Syndrome.
My daughter has Prader-Willi Syndrome and I have to say it breaks my heart how the kid in the video is treated, although I highly believe they just don't know better. Like you said, you need to give the kids the right guidelines very early on, espacially when it comes to food, but if you do, they can have a happy and fulfilling life. I know for sure I do everything in my power to give that life to my daughter :)
My cousin had a daughter with the condition, unfortunately. The parents were in some cult that thought all disease was caused by willfulness, and they treated their daughter horribly. She eventually died from an infection that required her leg to be amputated because they delayed treatment so long. How they avoided going to jail, I'll never understand.
Those support groups have been essential to my care and my families coping with different diseases. There's support groups for mito families which have been amazing and so many resources on things like palliative care, hospice, anesthesia recommendations, etc. mito stands for mitochondrial disease, I specifically have POLG mutation that is terminal. The average lifespan is 2 years old, I've made it to 21, 22 in November. Its extremely unlikely I'll make it out of my twenties, my friend with the same mutation who died early this year made it to 24, his memorial is this next weekend. I just wish we got more funding for primary mitochondrial diseases, especially since they are mostly progressive and terminal and honestly watching kids (and older adolescents like me) suffer and die is too much to bear sometimes. At our fundraiser (UMDF Energy walk) in Indiana this year, about 50 people showed up in support of one little girl who passed this year from all over the country.
I saw a show where a kid had that once and when his parents found out that he always felt hungry no matter what they literally locked their cabinets and controlled what food he had access to, it was the only way to keep him from dying of obesity.
Fun medical story: So I'm a recovering alcoholic, and one day I was very sick with a hangover, and threw up after drinking a bunch of water. It was pure black :S So I panicked thinking it was blood leaking into my stomach and went to the ER. They did a whole bunch of tests, and couldn't find anything wrong, but kept me in overnight for monitoring. In the night, I threw up again, and again it was pure black. The ward nurse took a sample of it for examination, and I was up the rest of the night in a panic. The results came back the next day. It wasn't blood. So what was it? Coca-Cola. I'd drunk a ton of it the night before I got sick, and it turned out I was so vitamin deficient that my stomach simply couldn't absorb anything, so that coke, along with anything else I put down there was just sitting there. 6 litres of IV fluids and 3 rally packs of vitamins and by the next day I was right as rain. Still, that was the last straw for me, and I reached out for rehab that same day.
wow! That is really terrifying just to imagine. I am very, very happy for you, that you're on a healthy path now - bravo Yella!! You will stay true to you.
Sometimes a negative health consequence of unhealthy lifestyle smacks you in the face and changes you permanently. Best wishes on staying strong and sticking to your recovery.
I'm just glad to hear you didn't suffer too greatly from your turnaround event, and that you're recovering from alcoholism - too many people never make it to having a turnaround event, and many end up moving past it without chosing differently. Thank you, best of luck to you, and if you need to vent to a stranger at some point, you have my ear anytime!
When I was 8 months pregnant I developed a severe kidney and blood infection. When my son was born the infected blood had caused a 1 in 4 million issue called protein c deficiency. I was at one of the best hospitals in my country and they had no idea what it was. It would have killed him in 24 hours had they not took a chance and gave him blood infusions (containing the protein that he needed) The doctors asked us to sign forms to use his test results to teach other patients. He made a full recovery and is a happy healthy 10 month old. So very grateful for the doctors and nurses that saved my sweet boy ❤
Really happy for you 😄 It must have caused you so much stress and made you so worried for your poor child, I'm glad you are both feeling much better now❣️ Please stay safe and healthy :)
My sister has Prader-Willi. She actually has the rare disomic version of it. She was blessed because one of the person that gave birth to her (she was premature) was a PW specialist so he saw the symptoms early on when she was born. Since she was young we gave her a very strict diet and she is health, at a normal weight and no diabetes!
Same here! My nephew was diagnosed 2/3 weeks after his birth, so the parents were able to establish a very strict diet. The fridge and pantry are locked at all times so he can't eat when unsupervised. I heard they are testing a new medication that could regulate hunger for people with Prader-Willi syndrome.
After your sister and nephew ok with the locked pantry and fridge? I had a medical condition that made me hungry all the time (an Insulinoma where insulin is secreted constantly), and it was very uncomfortable to not eat when hungry. Do they not experience this discomfort? Do they have any physical symptoms that typically accompany hunger (headache, confusion, irritability, etc.)? Or is the hunger purely mentally driven? I’m just curious.
@@rhoward295 My sister doesn't seem to have problems with accompanying symptoms of hunger, and the only thing we had to lock was the kitchen when she was very young (I live in a country where the Kitchen is usually a room of its own). Now she has the discipline to not go and grab whatever she wants (She will be 18 next month). However, the condition brings deficiency with other hormones that can make it hard for her to control her emotions so she can have pretty intense tantrums and can be extremely happy, angry, sad, etc...
This part of prader willi is very misleading, it's not just an eating disorder. There's allot more that comes with prader willi syndrome. I know first hand, my little brother had it. I miss him so much.
@@Officialmryuck yeah the eating disorder is the most obvious and well known symptom of PW. But it’s certainly not the only one. PW is first à foremost a hormonal disorder. My little sister also has hypotonia, a slowness in brain development, a lack of growth hormone (we have to inject it to her every evening), a lack of puberty hormones and other symptoms that are consequences of the others. It was actually the hypotonia that she had as a baby that hinted that she might have PW as a newborn.
Seeing the boy getting his "treatments" was heart breaking. He looked so frightened and in pain. Having been in vet med for over 20 years and practicing fear free medicine this is so sad to see in human med.
How do you think it could "fear free"? It's not a cat or a dog, it's a human being. He can't be treated with crystals and music and they can't do anaesthesia each times he needs to have an injection or a treatment. They surely explained him what was going on and the purpose of the treatments. After that what do you think they can do?
@@xminusone1 if Veterinary medicine can figure it out and our patients don't understand when we tell them this needle is so you don't get really sick and die then human medicine especially pediatric can work better to figure it out. Even if it was explained to him which child or probably adult would be okay with setting them on FIRE! I am all for all types of medicine that people and doctors feel would be beneficial but there are ways to do it.
My son has PWS, he is 14 now. My husband and I started doing controlling food intake at age 5, which is when they start seeking food due to hyperphagia. We have meals schedule, so he knows when he is going to eat. He has 3 meals and 2 snacks total a day, I count carbs and calories since he is inna low carb diet. He sees a nutritionist, and he also exercise. We have a lock in our refrigerator and pantry, we do not leave food on the counters, we also do not serve seconds. Yep, It is a lot of work, but I am happy to say he is not overweight, he can participate in all physical activities at school and with us.
No seconds is sad. I always like to eat my food in two or three portions. Not because it's a lot, I just like it split up. I guess having it all served at once is overwhelming and kinda off-putting to me, but also eating in two portions kinda adds structure to my meals and helps me feel finished. I'm always sad when I learn there's no second portion - I always like my meals split up, even if it's only a small meal.
@@TechSupportDave I don't understand your comment, this is like telling the parents of a child with cancer to listen to the child if they don't want chemotherapy, he's 14, obviously he'd want to eat unhealthy foods, doesn't mean they should just listen to him and let him have them, small things even like snacks and a glass of juice everyday adds up, not just the actual calories they contain but also spoiling the discipline, the whole reason why the child is able to stay healthy is because of the strict diet, it's strict for sure but it's needed for him to stay healthy, you can't tell the parents to do what you wish your parents would do because it's not the same, it's just not right to relate your situation to someone with a disease
hey I can see these stupid comments under here of people who don't understand the complex situation around pws, so I just wanted to let you know you are doing an amazing job taking care of your son and watching his calorie intake and locking cabinets which is hard but you do it because you love your son! and all others of you, why don't you support this person instead of beating them down for doing something that is recommended for someone with Pws?! my brother lives a good life with locked cabinets and counting calories and with some help in his everyday life, even with pws! before you comment, make sure you know what you are talking about because this person is doing everything the right way! and before writing think; is it necessary, Is it nice, is it true? if not, then don't post!
Careful about having food in the garbage as well. I saw a documentary about a lady who had twin boys with this condition; she had to make sure not to have any food scraps in the trash bc they would get into it as well. Prayers for your son!
I rewatched this and it definitely had audio there before, so the only thing I can think of is that perhaps there was some sort of copyright strike that they had to cut the audio out for.
I was recently diagnosed with a rare condition. My primary care doctor was borderline excited that she now had 2 patients with the same rare condition. I mean, her excitement was over being able to compare our treatment directly, but still it's like woah, calm down there, this sucks for me! LOL
Reminds me of an interaction I actually had with someone with a sucky but rare-ish condition: "Whoah, you have Ehler-Danlos syndrome! That's cool! I mean, probably sucks for you, but, pretty fascinating"
I have a daughter with Prader-Willi syndrome. Fortunately, she was diagnosed at birth so we were able to put safeguards in place to help control excessive eating (locked cupboards/fridge etc.). She gets to eat pretty much the same food as we do, just less and high-calorie foods (chocolate, etc) only on special occasions. She is now 40 years old, and although a little overweight for her height, she is doing well. Although she has some cognitive deficiencies, she's fairly independent but will never be able to live without a care giver of some kind.
My brother has been diagnosed with Prader-Willi syndrome and was diagnosed at 5 years old. He is currently 17, and it is heartbreaking to see the pain he goes through, especially since he suffers from a lot of food allergies, so when he can steal food, it is much more painful for him. My brother also has some cognitive deficiencies, which make him act younger than he actually is. Has your daughter been tested for Autism? from what I've read online about this disease Autism, and Prader-Willi syndrome tend to go hand in hand. My brother suffers from Autism, so I'm just curious.
@@CreepyLolita She doesn't show any signs of Autism. She's a very friendly and out-going person. She does not have any food allergies but there are some foods she doesn't like the taste of and doesn't eat.
@@dsilvafb Been a while but I thnk my daughter didn't start walking until she was three and had only just started talking then. She didn't even crawl; when she wanted to go somewhere, she rolled.
We have friends who have a son with prader Willi. The kid is not overweight. They put a lot of effort in monitoring his eating and exercise. He has therapy of some kind since forever. He did a little below average in school, just finished and is learning a trade.
Have they tried supplying their child with limitless quantities of food, and acupuncture? Perhaps thats the trick. maybe a fiery towel also. in fact given the obesity epidemic in the USA, have fiery towels ever been utilized to control overconsumption of food and poor diets? i needed to lift more weights, so i tried cupping and prayers to my incense sticks, and now am as jacked as arnie!
1:08 The patient failed to mention that he likely was exhaling the entire way up, as if you don’t, your lungs will expand too fast and pop like balloons, causing pneumothorax. I remember doing extensive reading on these issues when my family and I were studying up on getting our diving certs almost a decade ago. It’s all about air pressure.
I'm so glad Dr. Mike brought up Diabetes Insipidus because it often times gets confused with Diabetes Mellitus. I've had it since I was 5 as result of brain surgery to remove a pituitary tumor. Even some doctors and nurses get confused as to how to manage my health. I do see an endocrinologist as well as my family doctor.
This is very comforting to hear that others have the same rare condition that I do. I also had brain surgery to remove a benign tumor and as a result developed Diabetes Insipidus. It's an everyday process with medications and making sure to drink plenty of liquids to avoid dehydration. Radiation therapy was something I had to do a year after surgery because the tumor started to grow back. Stay safe everyone and know you aren't alone in this 💗
My brother is one of 4 people in 2 yrs to get eastern equine encephalitis, in our state. He not only survived but has zero lasting damaged. The other 3 either passed or have severe lasting nerve damage. He was one of only 15 in the entire USA
Yea it was scary. He had severe joint pain and muscle fatigue. But after about a week he was totally fine and that was about a month ago now. We didn't know what a bullet we had dodged until almost 2 weeks after when the bloodwork finally came back
@@ingGS I'm very sorry. We trully had no idea what a terrible virus he had. What's scary is that same mosquito could have gotten my 2 kids. We were all together when he got bit. My kids would not have been so lucky and I don't know what we would have done
As a scuba diver, that scares me. Many things can happens to us. Thankfully, I haven’t had any issues so far. But what you see in the depths, is unique
My dive budy got the bends once a few years ago and he described it as “Arthritis from hell” I am terrified of getting it because it’s unimaginably excruciating. But despite all those risks I am absolutely going to continue diving. It’s my favorite hobby and it’s a wonderful way to experience nature and an environment most people will never interact with.
I have a friend who ended up with a tooth ache after a dive. Turned out there was a cavity under an old filling and the pressure diving caused it to act up.
@@u4riahscI had that happen once. Air gets trapped under filling and expands during ascent causing pressure and pain. My filling blew out so my tooth quit hurting but it meant a dental visit. I probably wouldn't have known it was there for a while if it hadn't blown.
I worked at a summer camp for kids/teens with disabilities. 2 kids had Prader-Willi syndrome. It was tough and sad. The lengths they would go to sneak food had no bounds. Also other significant cognitive disabilities related to the condition
The treatment of that child was awful to watch. They acted as though he had a choice, but the whole issue with that disorder is that you really don't. They will absolutely dig through trash and worse, if there's nothing else available. They constantly feel like they are starving. This poor kid... I also imagined other children there and wholly believe that many lost weight. So would I if people tortured and shamed me.
I'm an OTA and one of my instructors had a total of 3 clients who had Prader-Willi, one in adulthood. She was very gentle about the way she spoke, but it was honestly a little brutal to hear. We learned about the aggression linked with the need to eat, how difficult management could be and how aware we needed to be of timing. One very small child was not allowed access to certain craft objects because of how drastically they could change when those hunger pangs hit. It sounds brutal, and I feel so much for them.
My cousin has both Down Syndrome and Prader-Wili, and watching this video I was actually amazed at how good of a job my aunt and uncle have done at establishing and enforcing rules around food and soda intake with him. He is an adult at this point, and while likely a bit overweight, it’s not to a highly noticeable degree (he doesn’t seem to have any issues with mobility or anything), and he’s definitely not morbidly obese. I feel bad for that child in the video, it looked kinda like he was being tortured.
Oh and he’s also one of the nicest and sweetest people I know, and loves his family very much. His family and him have done a fantastic job navigating everything they’ve had to go to, and I’m so glad he’s part of our extended family.
I've genuinely retched and almost vomited (as in, puke in the back of the throat but I kept it down) at the experience of eating fish pie, despite it being a hugely popular and widely eaten dish in much of the Anglosphere
I worked with someone who has Prader-Willis syndrome. She has to have an extremely strict diet and exercise regime to help her to maintain her current weight and prevent obesity. I've kept in contact with her and have seen how much progress she has had and how it has positively effected her mental health.
My parents were friends with a couple where the wife was 5'2 and the husband had Marfan's syndrome. He was over 7' tall. They had a son who was affected by it as well. Unfortunately, the son passed away at only 15 because of an aneurysm brought on by his condition. He was 6'10", taller than his dad was at that same age. The husband passed in his late 50s from a heart attack, which was also brought on by his condition. It was all so tragic. My mom is still friends with the wife, she's such a sweet lady.
Marfans is a pretty brutal condition. You look weird, stand very tall, and can die so young. Also, it's genetically dominant. Heart conditions are very common unfortunately.
@@UnCreativeBelieverPpl will give you hell for this comment... but honestly yea. My brother struggles BAD now with severe back problems bc my Gram passed a genetic disorder to my step-dad who is bedbound & disabled bc of it (he wasn't always so bad, but it worsens with age & the disks in his back literally just slip apart) & my idiot of a mother decided HE was the one to produce more kids with. So now my siblings & I are all suffering from the problems our parents passed to us & my brothers physical problems are already weighing on him & he's only 18!
As someone that has renal Diabetes Insipidus, I am impressed that you actually knew about it. I've had brain cancer, the tumor crushed my pituitary gland and it does not function. I have learned after many years in hospitals to now tell nurses that I am Vasopressin and Adrenal insufficient as opposed to having Diabetes Insipidus, as all they hear is "Diabetes". The amount of times I have gotten a blank stare from techs, or been told they needed to check my blood sugar has been staggering.
The fact that he has said that there really is no cure for it is partially true. I take Desmopressin which suppresses my feeling of constantly needing to pee or drink. If I don't take it, I will be on the toilet about every 30 minutes and easily drink gallons of liquids. Then, magically, when I take them, in an 8 hour shift at work, I will barely even finish 10 ozs. And maybe only go a handful of times. It throws off the bodies' sodium levels, and you literally feel like you're dying if you can't have any access to drinks un-medicated even though logically you know you're fine. When I was first being diagnosed they did water deprivation tests that made me literally want to kill. I was ready to drink out of the sink or toilet. 😬 It's definitely manageable, though. As long as I have access to my meds, I'm mostly good!
Hey I have diabetes insipidus too!! It really is irriating when people ask "Oh you have diabetes? Where's your finger prick?" I've been in the hospital SO many times and my blood sugar has always been checked every time lol
I have a huge red birthmark on the right side of my face (covering almost all of it) doctors where going crazy over it when I was born 'cause they had no idea if it was malignant (soo they discovered it wasn't but kept me under supervision my whole childhood), as a kid I was extremely self concious about it, people would stare or directly ask 'what do you have in your face?'. Don't even get me started on how I felt as a teen. But when doctors offered to completely get rit of it with with laser surgery, I completely refused, it's part of me and now I love it!
i love that!! i don't have the exact same thing, but i do have a small "strawberry" over my left eyelid that was supposed to go away by the time i was 1 but never did. it's not too noticeable until i cry, then i look like i have a black eye. my youngest son was born with them next to both nostrils and over one of his eyelids, too. I'm also covered head to toe in freckles and as much as i got teased when i was younger, but i absolutely love them and and my birth mark now. and of course, now everybody wants freckles and thinks they're cute (which yeah, they are) but i went through hell over them in school. funny how the tables turn sometimes
This really shows how smart Dr. Mike is.... not only did he have a reasonable amount of knowledge of each rare disease, he even knew what some were before the show mentioned their name.
@@finbob5 Yeah, but you can't prove a negative, so this is an unfair question. The question you should ask is, "How much do you trust an academic to not have researched the subject matter before commenting on it?" Suddenly it sounds very silly for me to assume he didn't do research.
My roommate, after months of misdiagnoses, was diagnosed with Wegener’s, which is apparently incredibly rare. He had more than one doctor come in and ask to examine him because “I’ve only ever seen this in textbooks.”
Wegener’s isn’t all that uncommon. It is rarely diagnosed in people living in warmer climates that is the reason doctors dont see then often near the equatorial zone.
My boss has Wegener's and it's fascinating. Although nowadays they prefer to call it Granulomatosis With Polyangiitis. Turns out doctor wegener wasn't a real great guy to be naming something after.
I once met a girl with Prader-Willi syndrome, and yes there is no cure. The disease causes them to never feel full, so they are constantly hungry. People affected will often go to extremes to get food. The only way to keep the weight down, is extreme vigilance from the surrounding people, which many people affected don't have.
I actually knew a boy with Prader-Willi syndrome, I was told by my dad to never give him my food (I share everything with everyone, I especially did in primary school) he was always complaining about being hungry, he'd try to steal everyone's food. He went as far as trying to steal teachers lunches as snacks and he eventually left the school. I've no idea where he is now but I hope he's doing atleast a bit better.
I have an adopted cousin that has Prader-Willi syndrome. Once, she was starting to be trustworthy so my aunt left her home alone (with precautions of course.) She broke out of the house, broke into the neighbors house to get food. She was caught and is going everywhere with my aunt again.
@@amrayabaptiste2933 it definitely is.I used to work in a specific group home facility that only housed PWS. Some ways they will seek out food is very dangerous. Not only food is locked up but any chemicals are as well. My 13 year old son is in the process of being genetically tested for it along with several other genetic defects that also causes obesity etc.
9:09 I respected Doc Mike's opinion to this, he's not afraid to say anything against treatment. That treatment is like you car doesn't start then instead of going into a mechanic you went into a bodyshop to repaint the car
My cousin has prader willie syndrome. I hate the fact that the documentary talks about stopping the excessive eating as if one of the main issues with this genetic disorder is the fact that their brain cannot tell them when they are full, that’s why people with this disorder become obese because they don’t know when they’re full and the only way to prevent overheating if you have someone there with them restricting
There will always be someone looking to cash in with no regard for the people affected by a disease or their loved ones. Sadly, they seem to market “fast cures “ to their loved ones who will do (and spend)anything to help their loved ones. I was in rehab for benzodiazepines and opioids and it was a ritzy type place with the majority of them being bored housewives there for drinking. $20,000 for 21 days. And all they did was wake you at 5 AM and lock you out of your bedroom til 10 PM having us do the AA book. Literally the same thing that happens at free meetings in church basements. They also tried using acupuncture and aromatherapy for benzo and alcohol withdrawals. “Spray the lavender when you feel ill” 🤔… You can die from both of them. In fact , my roommate was in DTs and hallucinating that her dog was in bed with her. I’m one weekend 4 people were taken to the hospital for DTs and seizures. The care was pathetic at best and yet they are still in business. People are desperate when someone they love is suffering.
@@AnnelleRichards1854 I doubt it. Obesity in PWS is a combination of constant hunger and a much much slower metabolism. As far as I know, the only affect ozempic really has on appetite has to do with nausea.
I have it, and was diagnosed since I was 3 months. I agree on that because I know when I'm full, and when I can't eat anymore, but I have to train myself to notice when I'm full, and when to stop. I try to reward myself when I have done really well from a short amount of time, to say you have done really well, and have not done anything bad, like sneaking food.
Working in social services, I saw many cases of Prader-Willis. It can be absolutely debilitating. It often comes along with developmental disorders as well. Keep in mind that there is evidence suggesting that "hanger" is a genetically inspired reaction to hunger, and some folks have Prader-Willis and hanger. Imagine beong perpetually, furiously hungry, almost always while locked up food is within sight but out of grasp. Due to procedural policy, the police had to be called on many occasions due to violent outbursts. All that said, I've seen other cases that are less severe in which caretakers (often guardians) have done an incredible job at managing the patient's condition by educating the patient about their condition and encouraging them to take an active role in strategizing management techniques such as cognitive behavioral therapies, accountability checks, and, perhaps most crucially, optimizing their environment and communal eating habits for positive health outcomes. It's a ton of work, but the results can be truly inspiring.
As PRM doctor had such a patient during my Junior Doctor years. He threw temper tantrums because he wasn't having enough food. Vigorous physical activity was advised to him, but his parents found difficult to find suitable activities to him due to mental delay. However, children's rehab is concoction of rare disorders, trauma, cerebral palsy and infants motor development delay seen in one place.
As a certified scuba diver, the guy who "shot like a bullet" to the surface got decompression sickness (also known as bends) where the nitrogen in your body gathers at your joints and gives you extreme pain and, as you saw, swelling. It can only be cured by going into a decompression (hyperbaric chamber as said in the video) chamber to let the nitrogen leave your body (that's why they inhale oxygen). Please note, I am just saying what Mike said using different terminology.
There was a good House episode about that. A guy who scuba dived and it went a bit wrong was on a flight with House & kept having issues. House of course, figured it out.
My son has Prader-Willi Syndrome. A county social worker fresh out of college took it upon herself to decide he simply needed to "make better choices''. He was abruptly taken with no warning and placed in foster care at 15 yrs old where his health only declined. The more he "acted out" begging for family, the social worker would isolate him from his family. He ended up on a vent with respiratory failure all alone in the hospital. The social worker ordered the hospital to not communicate with anyone besides her. She reported that he was in the hospital with belly pain and doing fine. In America social workers have immunity to kill.
I think it would be best to hire an attorney, and try seeking out public support online if you cant afford one. I'm sure people would help if they understood your situation. her actions are illegal, actually. a person cant be removed from parents due to symptoms of a medical condition. I hope you get your son back.
@@scarlett8782 Thank you. I appreciate it. Ive spent every day and night trying to figure out what I can do while also living in constant worry. The facts should simply speak for themselves but shoulds in family court dont matter. Im not counting on any kind of justice or truth to prevail in family court. Im dead serious when I say I believe in my heart criminal charges are worth perusing against the social worker in a court where shes not protected with a team of attorneys. I have nothing to hide. Me being unlikable cant possibly be enough to justify my sons torture.
@@purpleprose1315you should make accounts on some apps and share your story, along with making comments on other post similar to your story to spread it or joining groups
I'm in a mom group with ladies who had babies the same month as me (December 2021) and one of the babies actually has prader willi syndrome. He's doing so well right now, developmentally he's mostly on par with the other kids in the group, so hopefully he continues to do amazing.
I was friends with someone that had that pw syndrome. She was overweight. Her mom invited me to go to the ymca with them and we would go into the gym and walk around this track they had. No matter how much she tried to lose weight she couldn't. She died a few years later. I still miss her.
Its unfortunate that she passed, but you must have realised she wasn't being entirely honest about her diet, you can't just...not lose weight, especially if you're exercising, her death is tragic but I hope you've reflected on it
@@ZomboidMania Prader Willi syndrome also applies to the muscle mass of the people who have it. They have far less muscle mass, so it’s not as easy for them to work off the weight. Also, in a cruel twist of fate, they need about half the calories a regular person does. So it’s not all black and white there.
@@ZomboidMania Hi, I'm on a pretty strict calorie diet, my job is somewhat active, and I'm still gaining weight. The human body has some many tricks to conserve energy and stockpile stores for later that it's a game of cat-and-mouse to really, *effectively* lose weight (there's a reason why most weight loss programs and crash dieting have a yo-yo effect, because in losing that weight it makes your body stop at nothing to regain what it lost). Combine that with some metabolism dysfunction (abnormally slow or abnormally fast), and well...
You know what sucks, i turned 28 & have ostioarthitis & Ankaloysing spondilitis, my spine is slowly fusing, i cant stand up straight, my hips need replaced, im in pain 24/7 even on meds, cant run, cant jump, need a crutch to get around, cant work, need help changing or getting up, im working on getting ssi disability, autoimmune disease thats uncurable, just last year i was working fulltime, had my own place, in a relationship & my disease is that progessive that now less then a year later my life changed completely, cant walk normally, lost my job, need assistence, had to move in with family, no more relationship, broke fighting for disabilitly. Not even 30 need a bunch of joints replaced & have to live like this forever. Yay cant wait.
Wow. That is alot of changes in a very short time. Maybe you can find a support group to help you cope. Talk to a therapist. Too many changes all at once. Sounds like you're having a difficult time. You need support. All the best to you. Hope you find the strength to get through these challenging times.
Talking about the skin cancer. My dad had a scab on his arm. He never thought anything of it and it just became another freckle. His coworker noticed it looked larger so he had it looked at. It was cancer. He now sees a dermatologist every year to remove and check random spots that keep coming up. Always check your skin! You don't have to run to the doctor every time but definitely check yourself over.
My dad had a similiar thing. Persistent scabs on either side of his face that turned out to be skin cancers. They were caused by chemicals in his glasses frames, and apparently it happens quite a lot with cheap frames from China - which my dad had worn for roughly 20 years.
My brother had a rare genetic condition related to type one diabetes called Wolfram's Syndrome. It has an acronym related to it DIDMOAD standing for Diabetes insipidus Diabetes Mellitus Optic Atrophy and Defness. He was diagnosed with diabetes at 8 years old and by 13 he was color blind, and when he turned 16 he was classified as legally blind. He sweat all the time even in the coldest days of winter here in the Midwest and we always had to make sure we knew where the bathrooms were when we went somewhere. Sadly he passed away 8 years ago at age 29. The last case reminded me of what he had, this is why I bring it up.
So sorry for your lost, I'm sure he is still looking over your family! I have a question though:? You said when you went out you had to know where bathroom were? How does fit in with diabetes?
@@jamesfracasse8178 this is the diabetes insipidus,not the diabetes mellitus. Diabetes insipidus is due to an over production of a hormone that controls the amount of urine your kidneys produce. It also means you feel constantly thirsty,as you become dehydration very quickly. If you Google it you will get more detailed information
I personally find unusual skin pigmentation interesting and beautiful - Yulliana's condition seems like a reverse version of vitiligo (which I have, though as my normal skin colour is quite pale it's not that noticable).
There is a girl I went to school with that has Prader-willi syndrome. She is 34 now and campaigns and does a lot to bring awareness about the syndrome, and even campaigned to get a observance day in our state of Maine.
I have vitiligo and it reminds me of the girls skin condition. So far I’m lucky to have no signs of skin cancer, but I can definitely relate to being out in the sun, as my vitiligo spots get red and burned way fast and easier than my normal skin tone. I’m love how this man educates us about “scary” diseases and makes it fun for everyone!
I think I have a colleague with vitiligo. He's from India originally, but has patches of skin paler than me, and I'm very pale. Luckily, they're only small patches. I've not asked him, because it's a bit rude to do so.
This is quite late, but I always saw vitiligo as one of the prettiest things that a human body can do, even if it's technically a mutation. I cant imagine how anyone could find it "ugly"
Wow, the man whose body was swelling like that was very interesting. Obviously a horrible condition, but to have so much damage to the blood vessels and then that damage to cause so much irreversible swelling is something I've never heard of. I'll have to do more research on the matter, and the other conditions too. Thanks for the informative video, Dr. Mike!
Hey, I'm a girl that struggles with sickle cell disease, and I get frequent pain in the winter even when bundled up. Headaches, back pain, hip pain, and struggle to breathe are common symptoms for me. Could you consider doing a video or just talking about how to help and manage this disease??? Btw I love your content so much and I wish nothing but the best for you💕 Edit: Tysm for the likes
Huh, I know I don't have it but I can kinda relate to the symptoms. My joints have always been kinda bad (starting to think I have had arthritis since I was like, 8) and I have issues breathing sometimes. It feels horrible.
Idk if mine is sickle cell disease (cause idk if anemia counts as the rbc being deformed) but my blood oxygen levels are really low so I feel you. Infusions are the only thing keeping me going. Stay strong soldier 🫡
@@Asaspecimenyesimextraoddinary Hey, this is not really my business but have you not been diagnosed yet? Or are you being kept unaware of your diagnosis? By the way, there's multiple types of anemia (a thousand types probably) and considering by how you phrase it, you're transfusion dependent? Have the doctors not...like asked for further tests? Bone marrow biopsy maybe? Maybe a simple aspiration?
Fun fact about sickle cell anemia. Your immune to malaria. Malaria only effects normal book cells. Sickle cell is an evolutionary change. Rates of sickle cell anemia are highest in Malaria zones for this reason. Have your parents been tested for this. They both probably have one gene for it each (and that causes no health issues) but if you get the gene from both parents you have issues. DISCLAIMER: RESEARCH THIS. I LEARNED THIS STUDYING GENETICS AND EVOLUTION. THERE MAY BE OTHER CAUSES.
@@amialive3254 It’s not that I’m kept from any information, I just forgot. 🙆🏻♀️ (I’m 16 and my parents are kinda strict so they prefer to handle all the stuff with the doctors, and I could technically just ask them what kind of Anemia I might have but I’m lazy and don’t find the need to). I also didn’t know there were almost a thousand types of Anemia, that’s crazy.
My friend Liana was born prematurely with her organs on the outside, the doctor had to put them in backwards. She always got “I haven’t seen this since med school.” Every single time she saw a new doctor she said 😂it has a name, some backwards Latin name.
I am SO excited that you covered Prader-Willi Syndrome. My daughter is 5 and is living with PWS. Food management and controlling the environment is a MUST for successful weight/life quality management for them. Our families also have to lock food (fridge and cabinets) because it is impossible for PWS kids to control their appetite on their own. Her meals are planned, macros controlled, and she can never eat junk food. I did want to add that the hunger is biological and cellular to the core. Treatments are being developed to control the hunger which will significantly help with the weight management and behavior issues but imagine feeling starved 24/7 with no relief no matter how much you eat. We have hope! Thank you for the visibility Dr. Mike! 🧡#livelifefull
I have diabetes insipidus! I have it genetically (autosomal dominant) and the cranial/central kind where I don’t produce vasopressin. I knew there was a nephrogenic version, but it’s interesting to compare this guys’ version of the disease to mine. I’m glad you know what this disease is Doctor Mike! People get it confused with Diabetes Mellitus all the time and it’s very annoying!
My son has prader-willi syndrome, so thankful we I've in canada and found out at such a young age, we will be able to support him in leading as healthy a life style as possible. He was able to start hormone therapy at a very young age, this will aid him in leading a more normal life, he may still have hunger and behavior issues but we will face those as they come.
@@melissajarvis4829 he is on growth hormones, this is the biggest help for pws as the part of there brain that's affected from pws is the part that creates growth hormones(as wrll as other hormones), there are other hormones that can help depending on the individual he is currently just on gh, gh is the biggest help both physically and mentally. Gh has aided my son in being able to crawl, sit,and stand on his own by 1 yr of age and take his first assisted steps, it also helps with cognitive development.
A few months ago, I thought I had a really big mole on my hip, it was ACTUALLY a blotted tick that has been there FOR A MONTH, and I didn't know. My mother got ity off but because it was attached to me, I cried in extreme pain, and I had a band aid for a week
I *really* like they way Dr. Mike addressed his doubts in the application of acupuncture. That was such a thorough and explanatory answer vs. people just dismissing the whole practice.
My son has Prader-Willi Syndrome. He is 19 years-old and around 250 lbs. He also sits around 7 years-old mentally, and has khyphoscoliosis. He doesn't eat excessively, but still has a hard time losing weight.
I'm commenting twice because you brought up Tony Robbins and I know a little about him. My son had to go out to his very lavish home here in Florida. He couldn't find the entrance for "the help" so he pulled around to the driveway and was greeted by an employee of TR, who instructed my son that if he were to run into TR, he should address him as Principal, or maybe Principle, not sure which. How odd wealthy people are. My son didn't ever see him but did see his giant spiraling parking garage for his many, many cars and said his house beyond anything any human being needs. It's enormous and extra. He also said he saw loads of very young people in and out and found the experience very odd.
It’s really sad that the other children’s parents wanted to keep them away from the girl with the skin condition. They were afraid of being infected with disease, but they were the ones infecting her with self hatred. This is why it’s so important to teach children how different and unique we all are, in every aspect of our multi-faceted identity.
I mean, if you really think your child is in danger and you don't know that they can't get hurt from something it's not like you were trying to be malicious. What choice do you have as a parent other than trying to keep your kid safe? People can't be expected to know about every disease and condition in the entire world.
@@Timiren That's true, when I was a little girl my mother was told to keep me locked up away from the other kids in case I gave them my psoriasis. I've been ostracized because of my skin condition. By adults and kids alike.
@@Timiren this was me, i was about 6 or 7 cant remember the exact age but i know i was younger than 9 because thats when i moved schools, none of the other children would play or even go near my, my school nurse not only had to research it but also had to print out enough letters for every student AND staff member with information saying that i wasnt contagious, JUST to get people to be willing to go near me
I was born with vitiligo ( a disease that causes areas of skin to lose color, resulting in spots and patches of lighter skin) I can understand how this girl feels. I have always been self conscious of my “spots” and was bullied when I was younger. I have since learned to accept my skin, but I am still a little self conscious and try to hide my “spots” if I am in certain situations.
Personally, I think vitiligo and the other skin condition shown in this video look striking and beautiful, but I know a lot of people can be cruel and that it would probably be hard to feel confident after growing up with it and experiencing bullying and cruelty for being different. Just know that a lot of people genuinely find it beautiful! Either way, the way you look doesn't determine your worth, so you don't need to be conventionally beautiful to deserve love and kindness and to have value.
Polite? He called it pseudoscience. Guess he thinks a placebo is actual medicine. He's rude, arrogant and by calling it pseudoscience he ignores and eliminates the placebo effect. He should hand his license in.
@@caitlinc3585 It's very easy to drift from if your goal is to improve the health of your patients. If the goal is instead to be traditional, then that's not a medical practice, its a ritual and should be advertised as such.
Helping chronic pain patients be believed would be a great topic to cover - today I was turned away from occupational therapy after a collarbone fracture - that I was also sent home from the ER from 5 months ago! I have ehlers-danlos, dystonia, small fiber polyneuropathy and a bunch of other invisible/pain causing disorders that can be seen with a biopsy or blood test but I don't go around screaming and crying for every little thing or I wouldn't be able to live. I have been called psychosomatic and med seeking. I'm not on pain meds and would love nothing more to never see another doctor (sorry Mike!) I know my story is extreme but not unique. I wasn't diagnosed until I figured out what to be tested for and saw 30+ doctors. I think conversations need to change but how can a patient start the change if a doctor isn't willing to, in the moment? Like in an ER or urgent care where finding a new one isn't an option??
I live with chronic pain for 8 years now because of a workplace accident. I broke vertebrae and have 5 discs herniated. They are quite visible and the hydromorphone-contin is the only solution. It doesn't change anything for me. I also have hydromorphone to take when the pain is worse. It took me 2 years to be able to walk normally. If you are in so much in pain that you can't sleep or do anything but being bedridden, it's better than losing your life. When taken as prescribed it's harmless. Alternative medicines aren't as good and the same goes for cannabis. As my doctor say, it's only good for those who have psychosomatic and anxiety related pain. If you have real physical pain, you need real medication. Don't worry, it's nothing to be afraid of and it's doing less harm than Tylenol. The only one he refused to prescribe is oxycodone because it doesn't work well and this one has actually been proven harmful and dangerous. As for what I take currently, you won't even feel it. People are afraid because of the overdoses and the news fear mongering but as I already said, it's harmless if taken as prescribed and not hard to control either. Hydromorphone-contim is like 12 hours dilaudid you have to take twice a day. I currently have 15mg twice a day. The other one is dilaudid 2mg. I can take up to 2 doses twice a day and it doesn't make me sleep or stoned either. Hope it helps. Edit: Doctors aren't stupid. They have tests they specifically uses to find out when someone is faking or not. They have many of them. I know about them because my current girlfriend is a paediatrician Dr. And she told me about these. Not all of them but I know some exists and they will absolutely do it. There's also many other symptoms like high heartbeat, high blood pressure and someone can't fake these. If someone pretend to be in great pain but have normal blood pressure and heartbeat rate, it's suspicious. So next time, ask them to check theses signs as well.
@@xminusone1 Sorry to hear about your on-going pain. Mine is trivial in comparison, but I certainly understand the freaking out over the so-called CRISIS!!!! People like you (and me) who have chronic pain are left to their own devices. Often, that leads to buying street drugs (I do not, but I've certainly threatened my doctor that I would if needed). First time in my life I had to take a urine test. I was well within parameters. Sorry to natter on, but this is one of my trigger issues. How people in pain are treated like criminals or not treated at all. Best of luck to you.
AMEN SISTER!! SOOO many medical professionals who blow off, judge, assume, roll their eyes at, patients. SOOO many who don't give consideration to, don't take seriously, don't want to take time to second-think situations. And the worst, for me, is those who don't believe what I say about a condition I have had for decades. Pompous a-holes. Mike, hang on a minute more! Because pompous a-holes aside, I've had many many wonderful physicians that I appreciate to no end, and for whom I have Great Respect. The physician who did my craniotomy a few years ago was exceptional in every way. But I had to really shop around for a keeper, he was the 4th person I interviewed, as I was only going to the best I could find. I call it interviewing, the neurosurgeons thought it was a first appointment. And my GP is amazing, catching things my neurologist overlooked thanks to her attention to detail. Anyway. There's good and bad in everything. Have an awesome day, sister.
You can't win. If you're not on pain meds they don't always take you seriously. If you don't run to the doc for every little thing, they say you're not 'ill enough'.
I had a girl I went to school with that had that same thing the kid who is always hungry. It was so sad and so heartbreaking to watch the girl I grew up with go through it. They would have to monitor her at school and keep her away from trash cans and lunch rooms. I haven’t seen her since middle school but I hope she is okay.
I have Klein-Levin Syndrome, also called Sleeping Beauty Syndrome. I just got officially diagnosed a few months ago but have had it since I was around 14-15
@@Natzawa I have them around 3-4 times a year lasting 3-5 weeks. Sometimes they are random but most of the time they are related to getting sick (like cold, stomach flu, ect) or stress or travel, basically big changes and stress
@@cursedsailor7473 it’s a hypersomnia disorder; I sleep around 20bours a day, have excessive hunger and thirst, hypersexual, and a complete change in my cognitive abilities.
@@alexandriagartman3620 may i ask you how do you feel when you wake up after the kls syndrome? Do you feel extremely hungry or thirsty or have the urge to go to the toilet ?
This video is very important! My father died of melanoma that metastasized to his brain because of a mole. I was only three weeks old when he died. A few years ago, I had a similar mole in the same place as his on my back. I got it removed in time before anything could happen, thankfully! Since birth, I am constantly watching out for the sun, applying sunscreen, and sitting in the shade. THE SHADE AND SUNSCREEN ARE MY BEST FRIENDS!
I preach and preach about the importance of sunscreen to everyone and anyone. My dad has had skin cancer sooo many times from working on the Tarmac in the Air Force in AZ before sunscreen was a “thing.” He won’t even go outside before putting it on now- in ANY season! Glad you’re okay and good job taking care of yourself!
I've taken care of people with pws. It's so frustrating trying to keep up with their food seeking behavior. Going out in public with these people can be a nightmare.
@@uppitywoman3647 i swear my ADHD makes me behave that way sometimes. Low dopamine in my frontal cortex today? Food starts becoming irresietable. It's a nightmare. But stimulant medications help this and all other "dopamine seeking" behaviors, at least partially. I wonder if they have tried it for patients with Prader-Willi, which seems much more noticably rehabilitating.
@@Robespierre-lI food seeking behaviors are just a part of the PWS condition. It's a chromosomal disorder. Their bodies turn all calories straight to fat, low muscle tone/hard to build muscles, trouble developing secondary sex characteristics, prone to eye conditions, breathing conditions, their bodies require only half the calories we do (daily diets of 1,100 to 1,400 variables), and more. It's not just that they eat too much, bit their body works against them.
I love when Doctor Mike does videos like these. Seeing him watch videos that portray the broad spectrum of humanity with all its differences and react to the people presented without negativity, bias, pity, or judgment is so refreshing to see in any human, especially in a doctor.☺️ This is sadly, in my experience, not common, so it's all the more heartening to witness it time and time again in him. Thanks for that, Doctor Mike.👍 And I also love his comment at 8:30 about different sizes or heights still being a perfect match for each other. I'm only 5' tall myself vs Doctor Mike's 6'3 height. Just sayin'.😏
cmon Niki save Dr. Mike for me who’s 5’8” 😂 juuussst kiddin. i agree with how rare it is to find a medical professional who’s puts all judgement and bias aside in order to educate and take care of others :)
As someone with the birth mark same as in the video, I have always loved it. It made me feel different and special. After I grew up I joined some online communities about the topic to learn that people most of the time hates it and have had to learn how to love their skin. That surprised me so much! For this I learned how my parents handled the situation, made me love my different skin and ignore the bad, mal intentioned comments through my life. They always mentioned it as it was, different, but they also stated beautiful and made good association with it, which always made me feel special for having it and therefore loving it, through my whole childhood and teen years and of course I still love it. I know parents always do their best, but for me this only showed me how you handle a topic with truth, but kindness and love can influence so much someone!
I have had acupuncture on my back due to a muscle injury. I didn't want to depend on muscle relaxants like Diazepam, but without it, my back would re-seize. The acupuncture was done by a licenced physiotherapist, it was included in the price of his consultation and it took literally 2 goes and now my back is perfect again, I don't need any pain medications. I would 100% recommend it for muscle therapy from licenced professionals, I would not recommend the torture they put this poor boy through.
i get physio done for my strained arm nerves and i am gonna get massage therapy done ontop of having to see a counsellor for severe depression , severe anxiety and severe trust issues on top of also dealing with being epileptic and sleep issues
I'm an ex nurse had to retire early due to a patient injuring my back, had a torn disc & 2 prolapsed discs. The only thing that really helped the pain was acupuncture done by my doctor, I was a complete sceptic but it works!😊
@@celestialphoenixqueen9258 I hope you are doing much better. That's a lot to deal with. Depression alone is miserable, but it often can be accompanied by other problems. Take good care of yourself, I wish you total wellness and peace of mind1
I dont have experience with acupuncture but have had some back issues like pinched nerves and locked up muscles due to stress. It got to a point where I had pain walking, sitting, doing anything at all, in my shoulders. I went to the doctor and they told me to go practice mindfullness lol What helped me a lot was doing yoga, and also I moved closer to the coast so I can go swimming frequently. Swimming in salt water can be a really good low-intensity workout for your back if you just take it easy. You float better in salt water than fresh water. And the motion of the waves is very relaxing. You can really slowly work up and make it more intense as your muscles recover. Its also a great fitness exercise for your entire body.
It's always nice to see stories of people with skin conditions embracing their differences. I have an extreme case of keratosis pilaris that has covered most of my body since I was a young child. It's not as noticeable as some skin conditions, but growing up I was often self-conscious about it. Nowadays it's still as present on me as ever, but I don't mind it as much.
I have Kp pretty bad on my arms and legs. I work with kids now and they ask me why my arms look like that, and i get to tell them my body just looks different and thats okay. And those kids who also have kp feel validated and hopefully they feel less uncomfortable with their skin.
My child has diabetes isipidus tied into hypopituritarism. I've heard some describe the feeling as "sandpaper" in their throat when they get thirsty. His is thankfully under control but the breakthroughs towards the end of his medications are INSANE. It doesn't seem to be well known enough for people to know it's different from diabetes mellitus unfortunately.
People are weird. When you have an albino or other special, rare animal it's expensive, pretty, cool. But when a person has a similar mutation they are bullied.
@@shaukahodan2373 People suck, they really do. Im just thankful my child has a chance to make friends despite being "different" in the eyes of many. These are real people and deserve compassion.
This is so cool to watch. I'm currently in PA school and its fun to try to find out what it is before they mention it and what treatments might be possible. BTW I love the info cards, they help with any lapse of knowledge the viewers has that doesn't need a whole portion of the video to explain.
I hope that kid is able to find some real help and that his family isn't scammed continuously. Being an overweight person myself I see scams all the time. Every single time the fine print always says "with proper diet and exercise." Yet people still fall for all the 'fun' or 'easy' things, because they want to believe these promises instead.
Yeah. Me too. I am significantly overweight and I have accepted that the only way to lose weight is to push through it and do the hard yards. Started cycling again, which made me realise how unfit I am. Luckily blood tests (dad has been recently diagnosed with diabetes) came back pretty much clear. Just a bit high in blood sugar and low in magnesium, both of which are fairly easy to fix. Can't imagine having Myasthenia Gravis (which is thankfully mild in my case) and diabetes. Already have one health problem I've got to deal with for the next 50+ years. Don't want another one.
I've worked with a child with prader willi syndrome. There can be significant behavioural issues and they can have little hands and feet. He was around 12 years old and he would eat anything - crayons, paper, plastic - all sorts of things. It's very difficult for them, as they really can't control it.
My late brother had cranial diabetes insipidus. Along with what we later found out LCH. He really hit the gene jackpot. It was terrible to see him suffer so much. There should be so much research on DI, the diagnosis alone took years!
I loved this upload. The serious Dr. Mike with a highly objective and considerate presentation is one of my faves. He's just so dynamic. Looking forward to the next Dr. Mike Checkup podcast. Yay!!! ( Also looking forward to the boxing match) .
There has been more research showing up about PWS and Angelman syndrome too. Since they're both chromosome 15 disorders. Depending on if it's a problem with the maternal or paternal expression/deletion, you get one or the other.
My cousin has Prader-Willi Syndrome. He is an inspiration. We have to be so careful what food is around him. He can’t speak and also have a curvature of the spine but he takes life as it comes and it just a superstar to us all.
I’ve got a couple of rare condition diagnoses: -Retinitis Pigmentosa which has made me legally blind - Lipoedema a rare adipose tissue disorder - global Primary Lymphoedema I’m also in the process of getting assessed for Ehlers Danlos Syndrome
I'd never heard of "congenital melanocytic nevus" before. Sounds like kinda' the opposite of vitiligo. So interesting how almost every condition you can think of has an opposite: too much of something, or too little of something. It's nice that Yulianna can be a face and a voice for people with this condition. It sure helps that other than the skin pigmentation, she is "conventionally attractive," in terms of being slim, fit, toned, beautiful of face, etc. Sort of how Winnie Harlow is a model with vitiligo: she is 'otherwise' a conventionally attractive model, the only difference being her skin coloration. It would be kinda' nice if we ('we' being a collective generalization of society) could more readily accept people of truly ALL looks, sizes, shapes, colors, color variations, etc. Maybe we'll get there, some day. In the meantime, folks like Yulianna and Winnie work hard to fight for pigmentation acceptance, and that's good, too.
Ikr! It’s gorgeous to me, idk- like humans in general are pretty visually boring in comparison to other animals with stark patterns or vibrant colors. Conditions that change the pigment of skin, eyes, hair, etc have always struck me as beautiful. Idk why they’re seen as ugly by people.
Dude thats an extremely beautiful woman, I would not mind the skin condition at all let me tell ya. Being ugly is a far bigger handicap for women than what she has.
I went to school with a boy who had Prader-Willi Syndrome. Nobody knew that he had this condition and the poor kid was bullied so much because of his size. I'm glad for platforms like this that can help educate others about rare conditions.
I met a girl with the second one! She was very self conscious but to be honest everyone thought she was beautiful regardless. They didn’t look ugly! They just looked like lots of beauty marks.
Love this video idea! I have Hereditary Angioedema (HAE), which is a very rare and potentially life-threatening disease that causes episodic swelling in any of the soft tissues of the body. I’ve had a few doctors seem almost excited to meet someone who has it and learn more about what the condition means for me. I don’t mind their curiosity at all because it’s an interesting condition to discuss and I find that those conversations actually lead to better care. I found a really excellent primary care doctor years ago who seemed thrilled to learn more about my condition and he helped me find an amazing and knowledgeable immunologist who got my (exorbitantly expensive) preventative medication approved by my insurance company. Thanks to both of them, I haven’t had a swelling attack in over a year. :)
I’m taking an anatomy and physiology course that is pretty advanced and is basically shoving everything at us all at once for us to learn. Got no breather but your videos are so well put together and have recaps of what we learned that it makes me happy and enjoy learning anatomy even more❤ tysm dr mike!!!
I love how Dr Mike pauses, spits some of his medical knowledge on us, and the video continues to say exactly what he said. It's really satisfying and probably validating.
tbh china is just too traditional about customs and the fact that theyve been around for a millenia doesnt help. still using the same medicines people practiced when they lived in damn huts is insane to me but whatever.
Yeah, frankly, I don’t think he should have. These people are absolutely despicable and deserve zero respect. They are literally making a living selling false hope to sick people.
I read about Renal DI just a few weeks ago and it was kinda shocking to see it here. I thought it was not as life threatening but getting severely dehydrated to the point where your CNS can't function properly, that sounds terrible. I'm glad at least Marc was able to find something to stabilize his lifestyle a bit and that he won't be getting lost in a crowd anytime soon due to severe dehydration.
I had undiagnosed renal DI for a decade and it’s really only life threatening if we lose access to water. It’s not a fun thing to live with but I was always safe because I was able to self medicate by drinking 10 liters of water per day.
I’m always so surprised with how much Dr. Mike knows about these rare diseases. There was a video maybe a year ago where he mentioned Alport Syndrome and I was shocked because some nephrologists don’t even know about it. So my contribution to the lists of everyone’s rare diseases is that I have a rare form of Alport Syndrome and I also carry the recessive gene for Polycystic Kidney disease. Just my luck I guess
he still had to study and do research in order to make these videos. Doctors and scientists are always studying and learning new information or even reviewing old information that they learned in school.
Having rare diseases or issues can be so frustrating, to say the least. I have Alkaptonuria but one good benefit to social media is being able to connect with other people around the world.
Someone I know has Prader-Willi Syndrome. Her parents made it a necessity early on in her development to understand what is going on with her and to teach her how to successfully live a healthy and full life with her genetic condition. She is such an inspiration to others to learn more about the genetic condition and she has even participated in medical trials to help others like her. Her mother has created an amazing local and virtual community for families who have children with Prader-Willi Syndrome.
I hope that person help those who have the prader willi syndrome. Also I know it take a lot of effort to resist the urge of eating a lot.
My daughter has Prader-Willi Syndrome and I have to say it breaks my heart how the kid in the video is treated, although I highly believe they just don't know better. Like you said, you need to give the kids the right guidelines very early on, espacially when it comes to food, but if you do, they can have a happy and fulfilling life. I know for sure I do everything in my power to give that life to my daughter :)
My cousin had a daughter with the condition, unfortunately. The parents were in some cult that thought all disease was caused by willfulness, and they treated their daughter horribly. She eventually died from an infection that required her leg to be amputated because they delayed treatment so long. How they avoided going to jail, I'll never understand.
Those support groups have been essential to my care and my families coping with different diseases. There's support groups for mito families which have been amazing and so many resources on things like palliative care, hospice, anesthesia recommendations, etc. mito stands for mitochondrial disease, I specifically have POLG mutation that is terminal. The average lifespan is 2 years old, I've made it to 21, 22 in November. Its extremely unlikely I'll make it out of my twenties, my friend with the same mutation who died early this year made it to 24, his memorial is this next weekend. I just wish we got more funding for primary mitochondrial diseases, especially since they are mostly progressive and terminal and honestly watching kids (and older adolescents like me) suffer and die is too much to bear sometimes. At our fundraiser (UMDF Energy walk) in Indiana this year, about 50 people showed up in support of one little girl who passed this year from all over the country.
I saw a show where a kid had that once and when his parents found out that he always felt hungry no matter what they literally locked their cabinets and controlled what food he had access to, it was the only way to keep him from dying of obesity.
Fun medical story: So I'm a recovering alcoholic, and one day I was very sick with a hangover, and threw up after drinking a bunch of water. It was pure black :S So I panicked thinking it was blood leaking into my stomach and went to the ER. They did a whole bunch of tests, and couldn't find anything wrong, but kept me in overnight for monitoring. In the night, I threw up again, and again it was pure black. The ward nurse took a sample of it for examination, and I was up the rest of the night in a panic. The results came back the next day. It wasn't blood. So what was it?
Coca-Cola.
I'd drunk a ton of it the night before I got sick, and it turned out I was so vitamin deficient that my stomach simply couldn't absorb anything, so that coke, along with anything else I put down there was just sitting there. 6 litres of IV fluids and 3 rally packs of vitamins and by the next day I was right as rain. Still, that was the last straw for me, and I reached out for rehab that same day.
Congratulations and good job on recovery. :)
wow! That is really terrifying just to imagine. I am very, very happy for you, that you're on a healthy path now - bravo Yella!! You will stay true to you.
Sometimes a negative health consequence of unhealthy lifestyle smacks you in the face and changes you permanently. Best wishes on staying strong and sticking to your recovery.
That's fucked up, and really interesting.
I'm just glad to hear you didn't suffer too greatly from your turnaround event, and that you're recovering from alcoholism - too many people never make it to having a turnaround event, and many end up moving past it without chosing differently.
Thank you, best of luck to you, and if you need to vent to a stranger at some point, you have my ear anytime!
When I was 8 months pregnant I developed a severe kidney and blood infection. When my son was born the infected blood had caused a 1 in 4 million issue called protein c deficiency. I was at one of the best hospitals in my country and they had no idea what it was. It would have killed him in 24 hours had they not took a chance and gave him blood infusions (containing the protein that he needed) The doctors asked us to sign forms to use his test results to teach other patients. He made a full recovery and is a happy healthy 10 month old. So very grateful for the doctors and nurses that saved my sweet boy ❤
Really happy for you 😄
It must have caused you so much stress and made you so worried for your poor child, I'm glad you are both feeling much better now❣️
Please stay safe and healthy :)
Waoh, that’s crazy.
- 10 months old, posted 4 weeks ago
Happy first birthday to your son! 🎉🎇🎂
@@croom332 I dont want to be an annoying person but 11 moths doesn't equal a year.
@@edgydust2621 yeah, I was confused by that comment too 😅
My sister has Prader-Willi. She actually has the rare disomic version of it. She was blessed because one of the person that gave birth to her (she was premature) was a PW specialist so he saw the symptoms early on when she was born. Since she was young we gave her a very strict diet and she is health, at a normal weight and no diabetes!
Same here! My nephew was diagnosed 2/3 weeks after his birth, so the parents were able to establish a very strict diet. The fridge and pantry are locked at all times so he can't eat when unsupervised. I heard they are testing a new medication that could regulate hunger for people with Prader-Willi syndrome.
After your sister and nephew ok with the locked pantry and fridge? I had a medical condition that made me hungry all the time (an Insulinoma where insulin is secreted constantly), and it was very uncomfortable to not eat when hungry. Do they not experience this discomfort? Do they have any physical symptoms that typically accompany hunger (headache, confusion, irritability, etc.)? Or is the hunger purely mentally driven? I’m just curious.
@@rhoward295 My sister doesn't seem to have problems with accompanying symptoms of hunger, and the only thing we had to lock was the kitchen when she was very young (I live in a country where the Kitchen is usually a room of its own). Now she has the discipline to not go and grab whatever she wants (She will be 18 next month). However, the condition brings deficiency with other hormones that can make it hard for her to control her emotions so she can have pretty intense tantrums and can be extremely happy, angry, sad, etc...
This part of prader willi is very misleading, it's not just an eating disorder. There's allot more that comes with prader willi syndrome. I know first hand, my little brother had it. I miss him so much.
@@Officialmryuck yeah the eating disorder is the most obvious and well known symptom of PW. But it’s certainly not the only one. PW is first à foremost a hormonal disorder. My little sister also has hypotonia, a slowness in brain development, a lack of growth hormone (we have to inject it to her every evening), a lack of puberty hormones and other symptoms that are consequences of the others. It was actually the hypotonia that she had as a baby that hinted that she might have PW as a newborn.
Seeing the boy getting his "treatments" was heart breaking. He looked so frightened and in pain. Having been in vet med for over 20 years and practicing fear free medicine this is so sad to see in human med.
I know right i felt so bad like i almost cried
How do you think it could "fear free"? It's not a cat or a dog, it's a human being. He can't be treated with crystals and music and they can't do anaesthesia each times he needs to have an injection or a treatment. They surely explained him what was going on and the purpose of the treatments. After that what do you think they can do?
@@xminusone1 if Veterinary medicine can figure it out and our patients don't understand when we tell them this needle is so you don't get really sick and die then human medicine especially pediatric can work better to figure it out. Even if it was explained to him which child or probably adult would be okay with setting them on FIRE! I am all for all types of medicine that people and doctors feel would be beneficial but there are ways to do it.
People with pws often have intellectual disabilities, slightly. He is also young. I wonder how much he understands about what is happening to him.
@@uppitywoman3647 totally agree
I can't get over how thoughtful Dr. Mike is in his videos. It always seems like he makes the effort to see things through the patient's perspective.
severe lasting nerve damage. He was one of only 15 in the entire USA
This was also very informative. The information that he presented was to the point.
Dr. Mike died yesterday. R.I.P
@@mikekelly5491 ??????
@@notspid yes?
My son has PWS, he is 14 now. My husband and I started doing controlling food intake at age 5, which is when they start seeking food due to hyperphagia.
We have meals schedule, so he knows when he is going to eat. He has 3 meals and 2 snacks total a day, I count carbs and calories since he is inna low carb diet. He sees a nutritionist, and he also exercise. We have a lock in our refrigerator and pantry, we do not leave food on the counters, we also do not serve seconds. Yep, It is a lot of work, but I am happy to say he is not overweight, he can participate in all physical activities at school and with us.
No seconds is sad. I always like to eat my food in two or three portions. Not because it's a lot, I just like it split up. I guess having it all served at once is overwhelming and kinda off-putting to me, but also eating in two portions kinda adds structure to my meals and helps me feel finished. I'm always sad when I learn there's no second portion - I always like my meals split up, even if it's only a small meal.
@@TechSupportDave I don't understand your comment, this is like telling the parents of a child with cancer to listen to the child if they don't want chemotherapy, he's 14, obviously he'd want to eat unhealthy foods, doesn't mean they should just listen to him and let him have them, small things even like snacks and a glass of juice everyday adds up, not just the actual calories they contain but also spoiling the discipline, the whole reason why the child is able to stay healthy is because of the strict diet, it's strict for sure but it's needed for him to stay healthy, you can't tell the parents to do what you wish your parents would do because it's not the same, it's just not right to relate your situation to someone with a disease
You won’t be able to control him when he goes to college. Start unlocking things and keeping food visible, so that he can function with it around him.
hey I can see these stupid comments under here of people who don't understand the complex situation around pws, so I just wanted to let you know you are doing an amazing job taking care of your son and watching his calorie intake and locking cabinets which is hard but you do it because you love your son! and all others of you, why don't you support this person instead of beating them down for doing something that is recommended for someone with Pws?! my brother lives a good life with locked cabinets and counting calories and with some help in his everyday life, even with pws! before you comment, make sure you know what you are talking about because this person is doing everything the right way!
and before writing think; is it necessary, Is it nice, is it true? if not, then don't post!
Careful about having food in the garbage as well. I saw a documentary about a lady who had twin boys with this condition; she had to make sure not to have any food scraps in the trash bc they would get into it as well. Prayers for your son!
15:36 the audio drops
Yeah it did with me too.
I got scared I thought it was my phone
I rewatched this and it definitely had audio there before, so the only thing I can think of is that perhaps there was some sort of copyright strike that they had to cut the audio out for.
@ same I’ve watched this before and I remember audio
same
I was recently diagnosed with a rare condition. My primary care doctor was borderline excited that she now had 2 patients with the same rare condition. I mean, her excitement was over being able to compare our treatment directly, but still it's like woah, calm down there, this sucks for me! LOL
Would you be comfortable expanding on the condition you have? I''d like to hear more!
Reminds me of an interaction I actually had with someone with a sucky but rare-ish condition: "Whoah, you have Ehler-Danlos syndrome! That's cool! I mean, probably sucks for you, but, pretty fascinating"
Yo as long as she treats you well it okay, that probably means she realy loves her job whivh is good for you!
God bless you man! 🙏
af
I have a daughter with Prader-Willi syndrome. Fortunately, she was diagnosed at birth so we were able to put safeguards in place to help control excessive eating (locked cupboards/fridge etc.). She gets to eat pretty much the same food as we do, just less and high-calorie foods (chocolate, etc) only on special occasions. She is now 40 years old, and although a little overweight for her height, she is doing well. Although she has some cognitive deficiencies, she's fairly independent but will never be able to live without a care giver of some kind.
@@largeformatprinter1946 no
My brother has been diagnosed with Prader-Willi syndrome and was diagnosed at 5 years old. He is currently 17, and it is heartbreaking to see the pain he goes through, especially since he suffers from a lot of food allergies, so when he can steal food, it is much more painful for him. My brother also has some cognitive deficiencies, which make him act younger than he actually is. Has your daughter been tested for Autism? from what I've read online about this disease Autism, and Prader-Willi syndrome tend to go hand in hand. My brother suffers from Autism, so I'm just curious.
@@CreepyLolita She doesn't show any signs of Autism. She's a very friendly and out-going person. She does not have any food allergies but there are some foods she doesn't like the taste of and doesn't eat.
My son is almost 3yo and PWS (Prader-Willi Syndrome) was diagnosed @1mo. It is still early to state anything, however he is evolving in baby steps..
@@dsilvafb Been a while but I thnk my daughter didn't start walking until she was three and had only just started talking then. She didn't even crawl; when she wanted to go somewhere, she rolled.
We have friends who have a son with prader Willi. The kid is not overweight. They put a lot of effort in monitoring his eating and exercise. He has therapy of some kind since forever. He did a little below average in school, just finished and is learning a trade.
I’m a pediatric nurse and I have actually seen a couple patients with Prader-Willi It’s a very fascinating disease process!
It's great they can keep up. Because I knew someone who had this and the kid would straight up break locks to get food. Even from the garbage bin!
@@BloodNote wow thats tough! Guess they are very lucky in comparison.
Have they tried supplying their child with limitless quantities of food, and acupuncture? Perhaps thats the trick. maybe a fiery towel also. in fact given the obesity epidemic in the USA, have fiery towels ever been utilized to control overconsumption of food and poor diets? i needed to lift more weights, so i tried cupping and prayers to my incense sticks, and now am as jacked as arnie!
1:08 The patient failed to mention that he likely was exhaling the entire way up, as if you don’t, your lungs will expand too fast and pop like balloons, causing pneumothorax. I remember doing extensive reading on these issues when my family and I were studying up on getting our diving certs almost a decade ago. It’s all about air pressure.
Well, his whole job is diving. I’m sure he didn’t think that others wouldn’t know that.
I'm so glad Dr. Mike brought up Diabetes Insipidus because it often times gets confused with Diabetes Mellitus. I've had it since I was 5 as result of brain surgery to remove a pituitary tumor. Even some doctors and nurses get confused as to how to manage my health. I do see an endocrinologist as well as my family doctor.
I never actually knew that you can get diabetes insipidus from brain surgery/pituitary tumors! I was born with it so maybe that's why I never knew lol
This is very comforting to hear that others have the same rare condition that I do. I also had brain surgery to remove a benign tumor and as a result developed Diabetes Insipidus. It's an everyday process with medications and making sure to drink plenty of liquids to avoid dehydration. Radiation therapy was something I had to do a year after surgery because the tumor started to grow back. Stay safe everyone and know you aren't alone in this 💗
@@k.harris9586 Thank you! 🙏
I have it too since infancy. But I am treated with Vasopressin,an anti-diuretic so I was a bit confused.
I think my older brother has that - not sure what caused it though.
My brother is one of 4 people in 2 yrs to get eastern equine encephalitis, in our state. He not only survived but has zero lasting damaged. The other 3 either passed or have severe lasting nerve damage.
He was one of only 15 in the entire USA
Wow, that’s a blessing to your brother and your family. I know someone from Venezuela who got it and he wasn’t so lucky. He’s no longer with us.
Wow this is actually incredible
chad brother
Yea it was scary. He had severe joint pain and muscle fatigue. But after about a week he was totally fine and that was about a month ago now. We didn't know what a bullet we had dodged until almost 2 weeks after when the bloodwork finally came back
@@ingGS I'm very sorry. We trully had no idea what a terrible virus he had. What's scary is that same mosquito could have gotten my 2 kids. We were all together when he got bit.
My kids would not have been so lucky and I don't know what we would have done
As a scuba diver, that scares me. Many things can happens to us. Thankfully, I haven’t had any issues so far. But what you see in the depths, is unique
My dive budy got the bends once a few years ago and he described it as “Arthritis from hell” I am terrified of getting it because it’s unimaginably excruciating. But despite all those risks I am absolutely going to continue diving. It’s my favorite hobby and it’s a wonderful way to experience nature and an environment most people will never interact with.
I couldn't imagine being the diver and having to choose between drowning and the bends. That is a terrible choice
I have a friend who ended up with a tooth ache after a dive. Turned out there was a cavity under an old filling and the pressure diving caused it to act up.
@@u4riahscI had that happen once. Air gets trapped under filling and expands during ascent causing pressure and pain. My filling blew out so my tooth quit hurting but it meant a dental visit. I probably wouldn't have known it was there for a while if it hadn't blown.
Imagine having a condition and the doctor is like hey, we are going to put a flaming rag on top of your abdomen. Is that all right? 12:21
seems good to me
I worked at a summer camp for kids/teens with disabilities. 2 kids had Prader-Willi syndrome. It was tough and sad. The lengths they would go to sneak food had no bounds. Also other significant cognitive disabilities related to the condition
The treatment of that child was awful to watch. They acted as though he had a choice, but the whole issue with that disorder is that you really don't.
They will absolutely dig through trash and worse, if there's nothing else available. They constantly feel like they are starving. This poor kid...
I also imagined other children there and wholly believe that many lost weight. So would I if people tortured and shamed me.
I'm an OTA and one of my instructors had a total of 3 clients who had Prader-Willi, one in adulthood. She was very gentle about the way she spoke, but it was honestly a little brutal to hear. We learned about the aggression linked with the need to eat, how difficult management could be and how aware we needed to be of timing. One very small child was not allowed access to certain craft objects because of how drastically they could change when those hunger pangs hit. It sounds brutal, and I feel so much for them.
My cousin has both Down Syndrome and Prader-Wili, and watching this video I was actually amazed at how good of a job my aunt and uncle have done at establishing and enforcing rules around food and soda intake with him. He is an adult at this point, and while likely a bit overweight, it’s not to a highly noticeable degree (he doesn’t seem to have any issues with mobility or anything), and he’s definitely not morbidly obese. I feel bad for that child in the video, it looked kinda like he was being tortured.
Oh and he’s also one of the nicest and sweetest people I know, and loves his family very much. His family and him have done a fantastic job navigating everything they’ve had to go to, and I’m so glad he’s part of our extended family.
I have a cousin with the syndrome and sadly all the food in her house has to be padlocked up and she has to have constant supervision.
This man is a doctor and still makes bad diseases fun to learn
Not as fun as chubbyemu
What can’t he do 😅❤
Not fun man ~iNtReStInG~
@@khalilahd. be a vet lolllololololoolol
Exactly That is the Point of Doctor Mike
Video idea: Can eating food you dislike actually make you sick? If so, how? I’d love to hear his thoughts on this one.
It can, but it’s psychological. It’s real, but it’s caused by a visceral reaction to something you find repulsive.
Perhaps you are ill we need to get to work right away before the disease takes ahold of you
I've genuinely retched and almost vomited (as in, puke in the back of the throat but I kept it down) at the experience of eating fish pie, despite it being a hugely popular and widely eaten dish in much of the Anglosphere
Did you comment this on Food Theory too?
My head starts hurting when eating noodle soup(or whatever its called in english), even though everyone i know loves it
I worked with someone who has Prader-Willis syndrome. She has to have an extremely strict diet and exercise regime to help her to maintain her current weight and prevent obesity. I've kept in contact with her and have seen how much progress she has had and how it has positively effected her mental health.
The sound on this video cuts out at about 15:30
My parents were friends with a couple where the wife was 5'2 and the husband had Marfan's syndrome. He was over 7' tall. They had a son who was affected by it as well. Unfortunately, the son passed away at only 15 because of an aneurysm brought on by his condition. He was 6'10", taller than his dad was at that same age. The husband passed in his late 50s from a heart attack, which was also brought on by his condition. It was all so tragic. My mom is still friends with the wife, she's such a sweet lady.
Marfans is a pretty brutal condition. You look weird, stand very tall, and can die so young. Also, it's genetically dominant.
Heart conditions are very common unfortunately.
Pretty evil to choose to have a child knowing that could be passed down...
@@UnCreativeBelieverPpl will give you hell for this comment... but honestly yea. My brother struggles BAD now with severe back problems bc my Gram passed a genetic disorder to my step-dad who is bedbound & disabled bc of it (he wasn't always so bad, but it worsens with age & the disks in his back literally just slip apart) & my idiot of a mother decided HE was the one to produce more kids with. So now my siblings & I are all suffering from the problems our parents passed to us & my brothers physical problems are already weighing on him & he's only 18!
She wanted to marfon that marfan pp.
Because he was so tall.
As someone that has renal Diabetes Insipidus, I am impressed that you actually knew about it. I've had brain cancer, the tumor crushed my pituitary gland and it does not function. I have learned after many years in hospitals to now tell nurses that I am Vasopressin and Adrenal insufficient as opposed to having Diabetes Insipidus, as all they hear is "Diabetes". The amount of times I have gotten a blank stare from techs, or been told they needed to check my blood sugar has been staggering.
Thank you for being strong tho 😊
that's so frustrating omg 😭
how annoying to deal with
The fact that he has said that there really is no cure for it is partially true. I take Desmopressin which suppresses my feeling of constantly needing to pee or drink. If I don't take it, I will be on the toilet about every 30 minutes and easily drink gallons of liquids. Then, magically, when I take them, in an 8 hour shift at work, I will barely even finish 10 ozs. And maybe only go a handful of times.
It throws off the bodies' sodium levels, and you literally feel like you're dying if you can't have any access to drinks un-medicated even though logically you know you're fine. When I was first being diagnosed they did water deprivation tests that made me literally want to kill. I was ready to drink out of the sink or toilet. 😬 It's definitely manageable, though. As long as I have access to my meds, I'm mostly good!
Hey I have diabetes insipidus too!! It really is irriating when people ask "Oh you have diabetes? Where's your finger prick?" I've been in the hospital SO many times and my blood sugar has always been checked every time lol
I have a huge red birthmark on the right side of my face (covering almost all of it) doctors where going crazy over it when I was born 'cause they had no idea if it was malignant (soo they discovered it wasn't but kept me under supervision my whole childhood), as a kid I was extremely self concious about it, people would stare or directly ask 'what do you have in your face?'. Don't even get me started on how I felt as a teen. But when doctors offered to completely get rit of it with with laser surgery, I completely refused, it's part of me and now I love it!
Thats awesome you are so brave
Thumbs up for being strong.
I mean, you're a comment bot so I'm calling BS
i love that!! i don't have the exact same thing, but i do have a small "strawberry" over my left eyelid that was supposed to go away by the time i was 1 but never did. it's not too noticeable until i cry, then i look like i have a black eye. my youngest son was born with them next to both nostrils and over one of his eyelids, too. I'm also covered head to toe in freckles and as much as i got teased when i was younger, but i absolutely love them and and my birth mark now. and of course, now everybody wants freckles and thinks they're cute (which yeah, they are) but i went through hell over them in school. funny how the tables turn sometimes
Ew
"My son is really fat."
Traditional Chinese doctor: *''We will set fire to him.''*
Lmao
Gotta burn that fat one way or another, am I right?
This really shows how smart Dr. Mike is.... not only did he have a reasonable amount of knowledge of each rare disease, he even knew what some were before the show mentioned their name.
You realize this is tapped in advance right? He does not comment this live, and he has seen the videos before.
Doctor Mike is the anti-House MD after all
@@coolcat8b How do you know he's seen the videos before? How do you know he's not commenting on them live?
@@finbob5 Yeah, but you can't prove a negative, so this is an unfair question.
The question you should ask is, "How much do you trust an academic to not have researched the subject matter before commenting on it?"
Suddenly it sounds very silly for me to assume he didn't do research.
@@coolcat8b*_TAPPED_*????? TAPPED??? Do you mean "Taped"? Get gooder grammar my guy
My roommate, after months of misdiagnoses, was diagnosed with Wegener’s, which is apparently incredibly rare. He had more than one doctor come in and ask to examine him because “I’ve only ever seen this in textbooks.”
My sister-in-law has this as well
I hope at least they give him free check ups out of it
Wegener’s isn’t all that uncommon. It is rarely diagnosed in people living in warmer climates that is the reason doctors dont see then often near the equatorial zone.
My boss has Wegener's and it's fascinating. Although nowadays they prefer to call it Granulomatosis With Polyangiitis. Turns out doctor wegener wasn't a real great guy to be naming something after.
I once met a girl with Prader-Willi syndrome, and yes there is no cure. The disease causes them to never feel full, so they are constantly hungry. People affected will often go to extremes to get food. The only way to keep the weight down, is extreme vigilance from the surrounding people, which many people affected don't have.
I actually knew a boy with Prader-Willi syndrome, I was told by my dad to never give him my food (I share everything with everyone, I especially did in primary school) he was always complaining about being hungry, he'd try to steal everyone's food. He went as far as trying to steal teachers lunches as snacks and he eventually left the school. I've no idea where he is now but I hope he's doing atleast a bit better.
I have an adopted cousin that has Prader-Willi syndrome. Once, she was starting to be trustworthy so my aunt left her home alone (with precautions of course.) She broke out of the house, broke into the neighbors house to get food. She was caught and is going everywhere with my aunt again.
That must be so hard to feel hungry 24/7. Such an awful feeling. I wish there was something to stop the sensation.
I wish I had that syndrome so I could bulk like crazy
@@amrayabaptiste2933 it definitely is.I used to work in a specific group home facility that only housed PWS. Some ways they will seek out food is very dangerous. Not only food is locked up but any chemicals are as well. My 13 year old son is in the process of being genetically tested for it along with several other genetic defects that also causes obesity etc.
9:09 I respected Doc Mike's opinion to this, he's not afraid to say anything against treatment.
That treatment is like you car doesn't start then instead of going into a mechanic you went into a bodyshop to repaint the car
I've got to respect the guy's professionalism lmao they literally set the kid on fire and he's like "that doesn't seem evidence based".
he just simply stated the facts and i respect him for that
My cousin has prader willie syndrome. I hate the fact that the documentary talks about stopping the excessive eating as if one of the main issues with this genetic disorder is the fact that their brain cannot tell them when they are full, that’s why people with this disorder become obese because they don’t know when they’re full and the only way to prevent overheating if you have someone there with them restricting
❤️ Sending love from a Mom of a beautiful daughter with PWS
There will always be someone looking to cash in with no regard for the people affected by a disease or their loved ones. Sadly, they seem to market “fast cures “ to their loved ones who will do (and spend)anything to help their loved ones.
I was in rehab for benzodiazepines and opioids and it was a ritzy type place with the majority of them being bored housewives there for drinking. $20,000 for 21 days. And all they did was wake you at 5 AM and lock you out of your bedroom til 10 PM having us do the AA book. Literally the same thing that happens at free meetings in church basements.
They also tried using acupuncture and aromatherapy for benzo and alcohol withdrawals. “Spray the lavender when you feel ill” 🤔…
You can die from both of them. In fact , my roommate was in DTs and hallucinating that her dog was in bed with her. I’m one weekend 4 people were taken to the hospital for DTs and seizures. The care was pathetic at best and yet they are still in business. People are desperate when someone they love is suffering.
Is there any chance that something like Ozempic will help?
@@AnnelleRichards1854 I doubt it. Obesity in PWS is a combination of constant hunger and a much much slower metabolism. As far as I know, the only affect ozempic really has on appetite has to do with nausea.
I have it, and was diagnosed since I was 3 months. I agree on that because I know when I'm full, and when I can't eat anymore, but I have to train myself to notice when I'm full, and when to stop. I try to reward myself when I have done really well from a short amount of time, to say you have done really well, and have not done anything bad, like sneaking food.
Working in social services, I saw many cases of Prader-Willis. It can be absolutely debilitating. It often comes along with developmental disorders as well. Keep in mind that there is evidence suggesting that "hanger" is a genetically inspired reaction to hunger, and some folks have Prader-Willis and hanger. Imagine beong perpetually, furiously hungry, almost always while locked up food is within sight but out of grasp. Due to procedural policy, the police had to be called on many occasions due to violent outbursts.
All that said, I've seen other cases that are less severe in which caretakers (often guardians) have done an incredible job at managing the patient's condition by educating the patient about their condition and encouraging them to take an active role in strategizing management techniques such as cognitive behavioral therapies, accountability checks, and, perhaps most crucially, optimizing their environment and communal eating habits for positive health outcomes. It's a ton of work, but the results can be truly inspiring.
Better to call the cops than try to handle it yourself
As PRM doctor had such a patient during my Junior Doctor years. He threw temper tantrums because he wasn't having enough food. Vigorous physical activity was advised to him, but his parents found difficult to find suitable activities to him due to mental delay. However, children's rehab is concoction of rare disorders, trauma, cerebral palsy and infants motor development delay seen in one place.
As a certified scuba diver, the guy who "shot like a bullet" to the surface got decompression sickness (also known as bends) where the nitrogen in your body gathers at your joints and gives you extreme pain and, as you saw, swelling.
It can only be cured by going into a decompression (hyperbaric chamber as said in the video) chamber to let the nitrogen leave your body (that's why they inhale oxygen).
Please note, I am just saying what Mike said using different terminology.
Ah, the bends
B
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As someone who went to school to be a industrial diver and dropped out I agree
@@Silentcore12x lol
There was a good House episode about that. A guy who scuba dived and it went a bit wrong was on a flight with House & kept having issues. House of course, figured it out.
My son has Prader-Willi Syndrome. A county social worker fresh out of college took it upon herself to decide he simply needed to "make better choices''. He was abruptly taken with no warning and placed in foster care at 15 yrs old where his health only declined. The more he "acted out" begging for family, the social worker would isolate him from his family. He ended up on a vent with respiratory failure all alone in the hospital. The social worker ordered the hospital to not communicate with anyone besides her. She reported that he was in the hospital with belly pain and doing fine. In America social workers have immunity to kill.
I think it would be best to hire an attorney, and try seeking out public support online if you cant afford one. I'm sure people would help if they understood your situation. her actions are illegal, actually. a person cant be removed from parents due to symptoms of a medical condition. I hope you get your son back.
@@scarlett8782 Thank you. I appreciate it. Ive spent every day and night trying to figure out what I can do while also living in constant worry. The facts should simply speak for themselves but shoulds in family court dont matter. Im not counting on any kind of justice or truth to prevail in family court. Im dead serious when I say I believe in my heart criminal charges are worth perusing against the social worker in a court where shes not protected with a team of attorneys. I have nothing to hide. Me being unlikable cant possibly be enough to justify my sons torture.
@@purpleprose1315you should make accounts on some apps and share your story, along with making comments on other post similar to your story to spread it or joining groups
@@purpleprose1315- I’d be calling every news station in the area. Sometimes public shame is the only way to see results.
@@thecraftycyborg9024 going public is the only option
I'm in a mom group with ladies who had babies the same month as me (December 2021) and one of the babies actually has prader willi syndrome. He's doing so well right now, developmentally he's mostly on par with the other kids in the group, so hopefully he continues to do amazing.
Hopefully he can continue to regulate what he eats
I was friends with someone that had that pw syndrome. She was overweight. Her mom invited me to go to the ymca with them and we would go into the gym and walk around this track they had. No matter how much she tried to lose weight she couldn't. She died a few years later. I still miss her.
Sorry for your loss.
Its unfortunate that she passed, but you must have realised she wasn't being entirely honest about her diet, you can't just...not lose weight, especially if you're exercising, her death is tragic but I hope you've reflected on it
@@ZomboidMania Prader Willi syndrome also applies to the muscle mass of the people who have it. They have far less muscle mass, so it’s not as easy for them to work off the weight. Also, in a cruel twist of fate, they need about half the calories a regular person does. So it’s not all black and white there.
@@ZomboidMania Hi, I'm on a pretty strict calorie diet, my job is somewhat active, and I'm still gaining weight. The human body has some many tricks to conserve energy and stockpile stores for later that it's a game of cat-and-mouse to really, *effectively* lose weight (there's a reason why most weight loss programs and crash dieting have a yo-yo effect, because in losing that weight it makes your body stop at nothing to regain what it lost). Combine that with some metabolism dysfunction (abnormally slow or abnormally fast), and well...
@@ZomboidMania if you dont know alot about something just keep quiet, ok
It’s amazing how much knowledge Doctor Mike has and how he explains everything so perfectly
Are you Feeling I’ll?
He is the real version of Doctor Gregory House
@@Thememebro123 no and how about you?
I'm sure he's knowledgeable, but he probably researches conditions prior to the show
@@nvv2452 I sense the Disease in you
You know what sucks, i turned 28 & have ostioarthitis & Ankaloysing spondilitis, my spine is slowly fusing, i cant stand up straight, my hips need replaced, im in pain 24/7 even on meds, cant run, cant jump, need a crutch to get around, cant work, need help changing or getting up, im working on getting ssi disability, autoimmune disease thats uncurable, just last year i was working fulltime, had my own place, in a relationship & my disease is that progessive that now less then a year later my life changed completely, cant walk normally, lost my job, need assistence, had to move in with family, no more relationship, broke fighting for disabilitly. Not even 30 need a bunch of joints replaced & have to live like this forever. Yay cant wait.
Wow. That is alot of changes in a very short time. Maybe you can find a support group to help you cope. Talk to a therapist. Too many changes all at once. Sounds like you're having a difficult time. You need support. All the best to you. Hope you find the strength to get through these challenging times.
I feel for the people who have these extremely rare diseases. Though this is just very fascinating to learn about.
Very cool
He’s still alive. I haven’t seen his comments in ages.
He’s still alive. I haven’t seen his comments in ages.
Dude...get a life
@@estrobart6785 fr 💀
Talking about the skin cancer. My dad had a scab on his arm. He never thought anything of it and it just became another freckle. His coworker noticed it looked larger so he had it looked at. It was cancer. He now sees a dermatologist every year to remove and check random spots that keep coming up. Always check your skin! You don't have to run to the doctor every time but definitely check yourself over.
My dad had a similiar thing. Persistent scabs on either side of his face that turned out to be skin cancers. They were caused by chemicals in his glasses frames, and apparently it happens quite a lot with cheap frames from China - which my dad had worn for roughly 20 years.
@@LaurenPebble wft
@@joschistep3442 crazy right?
I only had a small mole, melanoma. I'm seen every 3mo for 3 yrs & every 6 to my 5th year out. Yearly seems too long!
@@LaurenPebble as someone who wears glasses. that is horrifying.
My brother had a rare genetic condition related to type one diabetes called Wolfram's Syndrome. It has an acronym related to it DIDMOAD standing for Diabetes insipidus Diabetes Mellitus Optic Atrophy and Defness.
He was diagnosed with diabetes at 8 years old and by 13 he was color blind, and when he turned 16 he was classified as legally blind. He sweat all the time even in the coldest days of winter here in the Midwest and we always had to make sure we knew where the bathrooms were when we went somewhere. Sadly he passed away 8 years ago at age 29. The last case reminded me of what he had, this is why I bring it up.
So sorry for your lost, I'm sure he is still looking over your family!
I have a question though:? You said when you went out you had to know where bathroom were?
How does fit in with diabetes?
@@jamesfracasse8178 this is the diabetes insipidus,not the diabetes mellitus.
Diabetes insipidus is due to an over production of a hormone that controls the amount of urine your kidneys produce. It also means you feel constantly thirsty,as you become dehydration very quickly.
If you Google it you will get more detailed information
@@helentee9863 I understand now, thanks for elaborating on the subject matter, have a good evening 🌆 and a good upcoming holiday season.
@@jamesfracasse8178 and you 😊
My husband had Wolfram's. He just passed in June. I came to the comments to say the same thing. Hope you are hanging in there.
Thank you for being smart and willing to be blunt about what you do and don’t know. Your knowledge is very much needed on a platform like UA-cam.
I personally find unusual skin pigmentation interesting and beautiful - Yulliana's condition seems like a reverse version of vitiligo (which I have, though as my normal skin colour is quite pale it's not that noticable).
I like to think that vitiligo is like the markings on a tiger, it makes you look badass!
I have those black marks on my ynw
She is beautiful and hot as hell.
I was thinking the same thing! That it looked like the reverse of vitiligo. I find both versions beautiful.
Yoooo, I have vitiligo too. My normal skin color is pretty tan, so it’s pretty noticeable. 🤷♂️
There is a girl I went to school with that has Prader-willi syndrome. She is 34 now and campaigns and does a lot to bring awareness about the syndrome, and even campaigned to get a observance day in our state of Maine.
I think I know her is her Vanessa
I have vitiligo and it reminds me of the girls skin condition. So far I’m lucky to have no signs of skin cancer, but I can definitely relate to being out in the sun, as my vitiligo spots get red and burned way fast and easier than my normal skin tone. I’m love how this man educates us about “scary” diseases and makes it fun for everyone!
my dumbass read that as Vertigo for some reason...
I think I have a colleague with vitiligo. He's from India originally, but has patches of skin paler than me, and I'm very pale. Luckily, they're only small patches.
I've not asked him, because it's a bit rude to do so.
My sister has vitiligo ❤
I thought Michael Jackson had vitiligo
This is quite late, but I always saw vitiligo as one of the prettiest things that a human body can do, even if it's technically a mutation. I cant imagine how anyone could find it "ugly"
12:41 "my bullshit treatment can only work if you do the actual treatment yourself in your free time."
Wow, the man whose body was swelling like that was very interesting. Obviously a horrible condition, but to have so much damage to the blood vessels and then that damage to cause so much irreversible swelling is something I've never heard of. I'll have to do more research on the matter, and the other conditions too. Thanks for the informative video, Dr. Mike!
Hey, I'm a girl that struggles with sickle cell disease, and I get frequent pain in the winter even when bundled up. Headaches, back pain, hip pain, and struggle to breathe are common symptoms for me. Could you consider doing a video or just talking about how to help and manage this disease??? Btw I love your content so much and I wish nothing but the best for you💕
Edit: Tysm for the likes
Huh, I know I don't have it but I can kinda relate to the symptoms. My joints have always been kinda bad (starting to think I have had arthritis since I was like, 8) and I have issues breathing sometimes. It feels horrible.
Idk if mine is sickle cell disease (cause idk if anemia counts as the rbc being deformed) but my blood oxygen levels are really low so I feel you. Infusions are the only thing keeping me going.
Stay strong soldier 🫡
@@Asaspecimenyesimextraoddinary Hey, this is not really my business but have you not been diagnosed yet? Or are you being kept unaware of your diagnosis? By the way, there's multiple types of anemia (a thousand types probably) and considering by how you phrase it, you're transfusion dependent? Have the doctors not...like asked for further tests? Bone marrow biopsy maybe? Maybe a simple aspiration?
Fun fact about sickle cell anemia. Your immune to malaria.
Malaria only effects normal book cells. Sickle cell is an evolutionary change. Rates of sickle cell anemia are highest in Malaria zones for this reason. Have your parents been tested for this. They both probably have one gene for it each (and that causes no health issues) but if you get the gene from both parents you have issues.
DISCLAIMER: RESEARCH THIS. I LEARNED THIS STUDYING GENETICS AND EVOLUTION. THERE MAY BE OTHER CAUSES.
@@amialive3254 It’s not that I’m kept from any information, I just forgot. 🙆🏻♀️ (I’m 16 and my parents are kinda strict so they prefer to handle all the stuff with the doctors, and I could technically just ask them what kind of Anemia I might have but I’m lazy and don’t find the need to).
I also didn’t know there were almost a thousand types of Anemia, that’s crazy.
My friend Liana was born prematurely with her organs on the outside, the doctor had to put them in backwards. She always got “I haven’t seen this since med school.” Every single time she saw a new doctor she said 😂it has a name, some backwards Latin name.
I am SO excited that you covered Prader-Willi Syndrome. My daughter is 5 and is living with PWS. Food management and controlling the environment is a MUST for successful weight/life quality management for them. Our families also have to lock food (fridge and cabinets) because it is impossible for PWS kids to control their appetite on their own. Her meals are planned, macros controlled, and she can never eat junk food. I did want to add that the hunger is biological and cellular to the core. Treatments are being developed to control the hunger which will significantly help with the weight management and behavior issues but imagine feeling starved 24/7 with no relief no matter how much you eat. We have hope! Thank you for the visibility Dr. Mike! 🧡#livelifefull
I have diabetes insipidus! I have it genetically (autosomal dominant) and the cranial/central kind where I don’t produce vasopressin. I knew there was a nephrogenic version, but it’s interesting to compare this guys’ version of the disease to mine. I’m glad you know what this disease is Doctor Mike! People get it confused with Diabetes Mellitus all the time and it’s very annoying!
My son has prader-willi syndrome, so thankful we I've in canada and found out at such a young age, we will be able to support him in leading as healthy a life style as possible. He was able to start hormone therapy at a very young age, this will aid him in leading a more normal life, he may still have hunger and behavior issues but we will face those as they come.
What hormone therapies are thought to help?
@@melissajarvis4829 he is on growth hormones, this is the biggest help for pws as the part of there brain that's affected from pws is the part that creates growth hormones(as wrll as other hormones), there are other hormones that can help depending on the individual he is currently just on gh, gh is the biggest help both physically and mentally. Gh has aided my son in being able to crawl, sit,and stand on his own by 1 yr of age and take his first assisted steps, it also helps with cognitive development.
Why did it just jump scare me with sperm lol 7:20
probably a recent copyright strike nobody else seems to be mentioning it.
A few months ago, I thought I had a really big mole on my hip, it was ACTUALLY a blotted tick that has been there FOR A MONTH, and I didn't know. My mother got ity off but because it was attached to me, I cried in extreme pain, and I had a band aid for a week
Evil little tick!!!! I hope your better now
@@Silver_wind_1987_ Evil indeed, I'm a lot better thanks
@@mrs.styles29 I'd burn it with fire after pulling it out. Just...burn.
@@Silver_wind_1987_ I put it in my fireplace right after mum pulled it out, I was wearing safety gloves
@Mrs. Styles good. Lil bugger is now in bug HD double hockey sticks.
I *really* like they way Dr. Mike addressed his doubts in the application of acupuncture. That was such a thorough and explanatory answer vs. people just dismissing the whole practice.
My son has Prader-Willi Syndrome. He is 19 years-old and around 250 lbs. He also sits around 7 years-old mentally, and has khyphoscoliosis. He doesn't eat excessively, but still has a hard time losing weight.
I'm commenting twice because you brought up Tony Robbins and I know a little about him. My son had to go out to his very lavish home here in Florida. He couldn't find the entrance for "the help" so he pulled around to the driveway and was greeted by an employee of TR, who instructed my son that if he were to run into TR, he should address him as Principal, or maybe Principle, not sure which. How odd wealthy people are.
My son didn't ever see him but did see his giant spiraling parking garage for his many, many cars and said his house beyond anything any human being needs. It's enormous and extra. He also said he saw loads of very young people in and out and found the experience very odd.
It’s really sad that the other children’s parents wanted to keep them away from the girl with the skin condition. They were afraid of being infected with disease, but they were the ones infecting her with self hatred. This is why it’s so important to teach children how different and unique we all are, in every aspect of our multi-faceted identity.
I mean, if you really think your child is in danger and you don't know that they can't get hurt from something it's not like you were trying to be malicious. What choice do you have as a parent other than trying to keep your kid safe? People can't be expected to know about every disease and condition in the entire world.
It's sadly very common around the people with skin conditions. Psoriasis is another example.
@@Timiren That's true, when I was a little girl my mother was told to keep me locked up away from the other kids in case I gave them my psoriasis. I've been ostracized because of my skin condition. By adults and kids alike.
@@Timiren this was me, i was about 6 or 7 cant remember the exact age but i know i was younger than 9 because thats when i moved schools, none of the other children would play or even go near my, my school nurse not only had to research it but also had to print out enough letters for every student AND staff member with information saying that i wasnt contagious, JUST to get people to be willing to go near me
@@stephsaguudefan1753 People don't think before typing.
I'm literally in medical school, but your explanation of peripheral edema was better than ANYTHING we had explained to us in class. Thank you so much!
Look up Lymphoedema and Lipoedema. We need more doctors who know about these two conditions.
Hope you’re doing well in school!
I had a patient in the PICU with Prader-Willi. He eventually died. He was one of the saddest patient I ever took cared for.
15:36 my sound cuts off?
Same
Me too
this is the comment i was looking for
😢what’s a shame
Yeah, it still does that. A shame cause that segment seemed really interesting. But I'm guessing it's muted due to copy-right or something.
I was born with vitiligo ( a disease that causes areas of skin to lose color, resulting in spots and patches of lighter skin)
I can understand how this girl feels. I have always been self conscious of my “spots” and was bullied when I was younger. I have since learned to accept my skin, but I am still a little self conscious and try to hide my “spots” if I am in certain situations.
I have vitiligo
Bro, Vitiligo is absolutely beautiful! If someone thinks you look bad, they just jealous
i love people with spots I think they're so cool and unique
Personally, I think vitiligo and the other skin condition shown in this video look striking and beautiful, but I know a lot of people can be cruel and that it would probably be hard to feel confident after growing up with it and experiencing bullying and cruelty for being different. Just know that a lot of people genuinely find it beautiful! Either way, the way you look doesn't determine your worth, so you don't need to be conventionally beautiful to deserve love and kindness and to have value.
My dad has vitiligo, he developed it after his 30s I think. Its really sad to see him go through the anxiety when it comes to going out.
Props to Mike for being very polite in his criticism of the treatment of a very young patient.
Polite? He called it pseudoscience. Guess he thinks a placebo is actual medicine. He's rude, arrogant and by calling it pseudoscience he ignores and eliminates the placebo effect. He should hand his license in.
A bit too polite, scamers don't deserve that kind of respect.
@@Zoykzmcits really not meant as a scam... its traditional medicine. something so taught into society that its hard to drift from
@@caitlinc3585 It's very easy to drift from if your goal is to improve the health of your patients. If the goal is instead to be traditional, then that's not a medical practice, its a ritual and should be advertised as such.
Helping chronic pain patients be believed would be a great topic to cover - today I was turned away from occupational therapy after a collarbone fracture - that I was also sent home from the ER from 5 months ago! I have ehlers-danlos, dystonia, small fiber polyneuropathy and a bunch of other invisible/pain causing disorders that can be seen with a biopsy or blood test but I don't go around screaming and crying for every little thing or I wouldn't be able to live. I have been called psychosomatic and med seeking. I'm not on pain meds and would love nothing more to never see another doctor (sorry Mike!) I know my story is extreme but not unique. I wasn't diagnosed until I figured out what to be tested for and saw 30+ doctors. I think conversations need to change but how can a patient start the change if a doctor isn't willing to, in the moment? Like in an ER or urgent care where finding a new one isn't an option??
I live with chronic pain for 8 years now because of a workplace accident. I broke vertebrae and have 5 discs herniated. They are quite visible and the hydromorphone-contin is the only solution. It doesn't change anything for me. I also have hydromorphone to take when the pain is worse. It took me 2 years to be able to walk normally. If you are in so much in pain that you can't sleep or do anything but being bedridden, it's better than losing your life. When taken as prescribed it's harmless. Alternative medicines aren't as good and the same goes for cannabis. As my doctor say, it's only good for those who have psychosomatic and anxiety related pain. If you have real physical pain, you need real medication. Don't worry, it's nothing to be afraid of and it's doing less harm than Tylenol. The only one he refused to prescribe is oxycodone because it doesn't work well and this one has actually been proven harmful and dangerous. As for what I take currently, you won't even feel it. People are afraid because of the overdoses and the news fear mongering but as I already said, it's harmless if taken as prescribed and not hard to control either. Hydromorphone-contim is like 12 hours dilaudid you have to take twice a day. I currently have 15mg twice a day. The other one is dilaudid 2mg. I can take up to 2 doses twice a day and it doesn't make me sleep or stoned either. Hope it helps.
Edit: Doctors aren't stupid. They have tests they specifically uses to find out when someone is faking or not. They have many of them. I know about them because my current girlfriend is a paediatrician Dr. And she told me about these. Not all of them but I know some exists and they will absolutely do it. There's also many other symptoms like high heartbeat, high blood pressure and someone can't fake these. If someone pretend to be in great pain but have normal blood pressure and heartbeat rate, it's suspicious. So next time, ask them to check theses signs as well.
Took 60 years for me to be diagnosed with EDS
@@xminusone1 Sorry to hear about your on-going pain. Mine is trivial in comparison, but I certainly understand the freaking out over the so-called CRISIS!!!! People like you (and me) who have chronic pain are left to their own devices. Often, that leads to buying street drugs (I do not, but I've certainly threatened my doctor that I would if needed). First time in my life I had to take a urine test. I was well within parameters. Sorry to natter on, but this is one of my trigger issues. How people in pain are treated like criminals or not treated at all. Best of luck to you.
AMEN SISTER!! SOOO many medical professionals who blow off, judge, assume, roll their eyes at, patients. SOOO many who don't give consideration to, don't take seriously, don't want to take time to second-think situations. And the worst, for me, is those who don't believe what I say about a condition I have had for decades. Pompous a-holes. Mike, hang on a minute more! Because pompous a-holes aside, I've had many many wonderful physicians that I appreciate to no end, and for whom I have Great Respect. The physician who did my craniotomy a few years ago was exceptional in every way. But I had to really shop around for a keeper, he was the 4th person I interviewed, as I was only going to the best I could find. I call it interviewing, the neurosurgeons thought it was a first appointment. And my GP is amazing, catching things my neurologist overlooked thanks to her attention to detail.
Anyway. There's good and bad in everything. Have an awesome day, sister.
You can't win. If you're not on pain meds they don't always take you seriously. If you don't run to the doc for every little thing, they say you're not 'ill enough'.
I had a girl I went to school with that had that same thing the kid who is always hungry. It was so sad and so heartbreaking to watch the girl I grew up with go through it. They would have to monitor her at school and keep her away from trash cans and lunch rooms. I haven’t seen her since middle school but I hope she is okay.
I have Klein-Levin Syndrome, also called Sleeping Beauty Syndrome. I just got officially diagnosed a few months ago but have had it since I was around 14-15
Out of curiosity how often do you experience KLS episodes? Does it happen frequently or randomly?
What does it do?
@@Natzawa I have them around 3-4 times a year lasting 3-5 weeks. Sometimes they are random but most of the time they are related to getting sick (like cold, stomach flu, ect) or stress or travel, basically big changes and stress
@@cursedsailor7473 it’s a hypersomnia disorder; I sleep around 20bours a day, have excessive hunger and thirst, hypersexual, and a complete change in my cognitive abilities.
@@alexandriagartman3620 may i ask you how do you feel when you wake up after the kls syndrome? Do you feel extremely hungry or thirsty or have the urge to go to the toilet ?
This video is very important! My father died of melanoma that metastasized to his brain because of a mole. I was only three weeks old when he died. A few years ago, I had a similar mole in the same place as his on my back. I got it removed in time before anything could happen, thankfully! Since birth, I am constantly watching out for the sun, applying sunscreen, and sitting in the shade. THE SHADE AND SUNSCREEN ARE MY BEST FRIENDS!
This video hit hard, because I could relate!
@Psycho ARod Thank you, even though I never really knew him, I know he’s my guardian Angel.
I’m so sorry for your loss, I hope you and your family are doing well :,)
@@kerilimburg9136 Thank you! Even though I was only three weeks old when I lost him, I know he is always watching me as my guardian Angel.
I preach and preach about the importance of sunscreen to everyone and anyone. My dad has had skin cancer sooo many times from working on the Tarmac in the Air Force in AZ before sunscreen was a “thing.” He won’t even go outside before putting it on now- in ANY season! Glad you’re okay and good job taking care of yourself!
I’m a pediatric nurse and I have actually seen a couple patients with Prader-Willi
It’s a very fascinating disease process!
I've taken care of people with pws. It's so frustrating trying to keep up with their food seeking behavior. Going out in public with these people can be a nightmare.
@@uppitywoman3647 i swear my ADHD makes me behave that way sometimes. Low dopamine in my frontal cortex today? Food starts becoming irresietable. It's a nightmare.
But stimulant medications help this and all other "dopamine seeking" behaviors, at least partially. I wonder if they have tried it for patients with Prader-Willi, which seems much more noticably rehabilitating.
@@Robespierre-lI food seeking behaviors are just a part of the PWS condition. It's a chromosomal disorder. Their bodies turn all calories straight to fat, low muscle tone/hard to build muscles, trouble developing secondary sex characteristics, prone to eye conditions, breathing conditions, their bodies require only half the calories we do (daily diets of 1,100 to 1,400 variables), and more. It's not just that they eat too much, bit their body works against them.
It’s not a disease it’s syndrome or a condition not a disease, if was a disease it would be prader willi disease.
Dude gained serious mass in minutes. A body building legend. All jokes aside I hope he gets his surgery paid for and recover. Seems like a chill fella
I love when Doctor Mike does videos like these. Seeing him watch videos that portray the broad spectrum of humanity with all its differences and react to the people presented without negativity, bias, pity, or judgment is so refreshing to see in any human, especially in a doctor.☺️
This is sadly, in my experience, not common, so it's all the more heartening to witness it time and time again in him.
Thanks for that, Doctor Mike.👍
And I also love his comment at 8:30 about different sizes or heights still being a perfect match for each other. I'm only 5' tall myself vs Doctor Mike's 6'3 height.
Just sayin'.😏
cmon Niki save Dr. Mike for me who’s 5’8” 😂 juuussst kiddin. i agree with how rare it is to find a medical professional who’s puts all judgement and bias aside in order to educate and take care of
others :)
As someone with the birth mark same as in the video, I have always loved it. It made me feel different and special.
After I grew up I joined some online communities about the topic to learn that people most of the time hates it and have had to learn how to love their skin. That surprised me so much!
For this I learned how my parents handled the situation, made me love my different skin and ignore the bad, mal intentioned comments through my life.
They always mentioned it as it was, different, but they also stated beautiful and made good association with it, which always made me feel special for having it and therefore loving it, through my whole childhood and teen years and of course I still love it.
I know parents always do their best, but for me this only showed me how you handle a topic with truth, but kindness and love can influence so much someone!
I have had acupuncture on my back due to a muscle injury. I didn't want to depend on muscle relaxants like Diazepam, but without it, my back would re-seize. The acupuncture was done by a licenced physiotherapist, it was included in the price of his consultation and it took literally 2 goes and now my back is perfect again, I don't need any pain medications. I would 100% recommend it for muscle therapy from licenced professionals, I would not recommend the torture they put this poor boy through.
i get physio done for my strained arm nerves and i am gonna get massage therapy done ontop of having to see a counsellor for severe depression , severe anxiety and severe trust issues on top of also dealing with being epileptic and sleep issues
I actually really want someone to explain this topic well, cause its really hard to tell if it's a placebo effect or not, its very interesting
I'm an ex nurse had to retire early due to a patient injuring my back, had a torn disc & 2 prolapsed discs. The only thing that really helped the pain was acupuncture done by my doctor, I was a complete sceptic but it works!😊
@@celestialphoenixqueen9258 I hope you
are doing much better. That's a lot to deal
with. Depression alone is miserable, but
it often can be accompanied by other
problems. Take good care of yourself,
I wish you total wellness and peace of
mind1
I dont have experience with acupuncture but have had some back issues like pinched nerves and locked up muscles due to stress. It got to a point where I had pain walking, sitting, doing anything at all, in my shoulders. I went to the doctor and they told me to go practice mindfullness lol
What helped me a lot was doing yoga, and also I moved closer to the coast so I can go swimming frequently. Swimming in salt water can be a really good low-intensity workout for your back if you just take it easy. You float better in salt water than fresh water. And the motion of the waves is very relaxing. You can really slowly work up and make it more intense as your muscles recover. Its also a great fitness exercise for your entire body.
I love this doctor. So compassionate!
It's always nice to see stories of people with skin conditions embracing their differences. I have an extreme case of keratosis pilaris that has covered most of my body since I was a young child. It's not as noticeable as some skin conditions, but growing up I was often self-conscious about it. Nowadays it's still as present on me as ever, but I don't mind it as much.
I know what your talking about I was born with Neurofibromatosis type 1
I have Kp pretty bad on my arms and legs. I work with kids now and they ask me why my arms look like that, and i get to tell them my body just looks different and thats okay. And those kids who also have kp feel validated and hopefully they feel less uncomfortable with their skin.
@@enigma7744
I also have Neurofibromatosis type 1
My child has diabetes isipidus tied into hypopituritarism. I've heard some describe the feeling as "sandpaper" in their throat when they get thirsty. His is thankfully under control but the breakthroughs towards the end of his medications are INSANE. It doesn't seem to be well known enough for people to know it's different from diabetes mellitus unfortunately.
People are weird. When you have an albino or other special, rare animal it's expensive, pretty, cool. But when a person has a similar mutation they are bullied.
@@shaukahodan2373 People suck, they really do. Im just thankful my child has a chance to make friends despite being "different" in the eyes of many.
These are real people and deserve compassion.
@@Emmy275 I’m surprised that he or she wasn’t bullied because of it
This is so cool to watch. I'm currently in PA school and its fun to try to find out what it is before they mention it and what treatments might be possible. BTW I love the info cards, they help with any lapse of knowledge the viewers has that doesn't need a whole portion of the video to explain.
I hope that kid is able to find some real help and that his family isn't scammed continuously.
Being an overweight person myself I see scams all the time. Every single time the fine print always says "with proper diet and exercise." Yet people still fall for all the 'fun' or 'easy' things, because they want to believe these promises instead.
Yeah. Me too. I am significantly overweight and I have accepted that the only way to lose weight is to push through it and do the hard yards. Started cycling again, which made me realise how unfit I am. Luckily blood tests (dad has been recently diagnosed with diabetes) came back pretty much clear. Just a bit high in blood sugar and low in magnesium, both of which are fairly easy to fix.
Can't imagine having Myasthenia Gravis (which is thankfully mild in my case) and diabetes. Already have one health problem I've got to deal with for the next 50+ years. Don't want another one.
I've worked with a child with prader willi syndrome. There can be significant behavioural issues and they can have little hands and feet. He was around 12 years old and he would eat anything - crayons, paper, plastic - all sorts of things. It's very difficult for them, as they really can't control it.
10:23 why did i think they were gonna pop him like a balloon 😭😭😭
That's criminal 😭
My late brother had cranial diabetes insipidus. Along with what we later found out LCH. He really hit the gene jackpot. It was terrible to see him suffer so much. There should be so much research on DI, the diagnosis alone took years!
3:45 😃 whoa cool!! It's like the opposite of Vitiligo. That's so cool!!
It’s like reverse vitiligo!
I loved this upload. The serious Dr. Mike with a highly objective and considerate presentation is one of my faves. He's just so dynamic. Looking forward to the next Dr. Mike Checkup podcast. Yay!!! ( Also looking forward to the boxing match) .
Why is there no audio for the last two minutes?
Yeah it happened to me two and others
Happened to me too
Me too
glad its not just me
"Me too" movement
Wait
Mayim Bialik's dissertation for her PhD was related to Prader-Willi Syndrome. A video with her would be interesting.
There has been more research showing up about PWS and Angelman syndrome too. Since they're both chromosome 15 disorders. Depending on if it's a problem with the maternal or paternal expression/deletion, you get one or the other.
My cousin has Prader-Willi Syndrome. He is an inspiration. We have to be so careful what food is around him. He can’t speak and also have a curvature of the spine but he takes life as it comes and it just a superstar to us all.
❤️ Sending love from a Mom of a daughter with PWS.
With or without birthmarks, at the age she is now, she's *always* gonna be perceived as attractive. As she should. She's absolutely stunning.
Thanks Doc! Your videos are very helpful.
I’ve got a couple of rare condition diagnoses:
-Retinitis Pigmentosa which has made me legally blind
- Lipoedema a rare adipose tissue disorder
- global Primary Lymphoedema
I’m also in the process of getting assessed for Ehlers Danlos Syndrome
Chill Sarah, it's not a competition leave some things to us
How could u type if you’re legally blind?
@@husansaggu there's such a thing as google you know
@@husansaggu legally blind ≠ no vision, some forms can be corrected with glasses, surgery, etc
@@husansaggu blindness has many types? Not just not being able to see
I'd never heard of "congenital melanocytic nevus" before. Sounds like kinda' the opposite of vitiligo. So interesting how almost every condition you can think of has an opposite: too much of something, or too little of something.
It's nice that Yulianna can be a face and a voice for people with this condition. It sure helps that other than the skin pigmentation, she is "conventionally attractive," in terms of being slim, fit, toned, beautiful of face, etc. Sort of how Winnie Harlow is a model with vitiligo: she is 'otherwise' a conventionally attractive model, the only difference being her skin coloration.
It would be kinda' nice if we ('we' being a collective generalization of society) could more readily accept people of truly ALL looks, sizes, shapes, colors, color variations, etc. Maybe we'll get there, some day.
In the meantime, folks like Yulianna and Winnie work hard to fight for pigmentation acceptance, and that's good, too.
Ikr! It’s gorgeous to me, idk- like humans in general are pretty visually boring in comparison to other animals with stark patterns or vibrant colors. Conditions that change the pigment of skin, eyes, hair, etc have always struck me as beautiful. Idk why they’re seen as ugly by people.
I was just thinking that this was the opposite of vitiligo
It starts at home. Some people are disappointing.
@Caitlyn Carvalho if you get all his powers and stuff then im down with getting it
Dude thats an extremely beautiful woman, I would not mind the skin condition at all let me tell ya. Being ugly is a far bigger handicap for women than what she has.
I went to school with a boy who had Prader-Willi Syndrome. Nobody knew that he had this condition and the poor kid was bullied so much because of his size. I'm glad for platforms like this that can help educate others about rare conditions.
I love how you explain everything to us, thanks for that :)
I met a girl with the second one! She was very self conscious but to be honest everyone thought she was beautiful regardless. They didn’t look ugly! They just looked like lots of beauty marks.
Love this video idea! I have Hereditary Angioedema (HAE), which is a very rare and potentially life-threatening disease that causes episodic swelling in any of the soft tissues of the body. I’ve had a few doctors seem almost excited to meet someone who has it and learn more about what the condition means for me. I don’t mind their curiosity at all because it’s an interesting condition to discuss and I find that those conversations actually lead to better care. I found a really excellent primary care doctor years ago who seemed thrilled to learn more about my condition and he helped me find an amazing and knowledgeable immunologist who got my (exorbitantly expensive) preventative medication approved by my insurance company. Thanks to both of them, I haven’t had a swelling attack in over a year. :)
I’m taking an anatomy and physiology course that is pretty advanced and is basically shoving everything at us all at once for us to learn. Got no breather but your videos are so well put together and have recaps of what we learned that it makes me happy and enjoy learning anatomy even more❤ tysm dr mike!!!
I love listening to Doctor Mike. Knowledgeable, intelligent, thoughtful and humorous.
I love how Dr Mike pauses, spits some of his medical knowledge on us, and the video continues to say exactly what he said. It's really satisfying and probably validating.
Watching Mike hold back on the "traditional" medicine was amazing.
Wonderful self control.
I wish he hadn't held back.
tbh china is just too traditional about customs and the fact that theyve been around for a millenia doesnt help. still using the same medicines people practiced when they lived in damn huts is insane to me but whatever.
I know, they set the poor kid on fire. Hope he is doing better.
@@newp0rt The worst is when they use endangered animals in the "cures". Tigers, rhinos, pangolins...
Yeah, frankly, I don’t think he should have. These people are absolutely despicable and deserve zero respect. They are literally making a living selling false hope to sick people.
12:00 man there taking burning calories to a whole new level
@ᴛᴇxᴇ±𝟷𝟺𝟽𝟶𝟼𝟹𝟻𝟷𝟷𝟹𝟼 What the Pe-woop are you meant to be?
hes getting burnt to a crisp 💀
I read about Renal DI just a few weeks ago and it was kinda shocking to see it here. I thought it was not as life threatening but getting severely dehydrated to the point where your CNS can't function properly, that sounds terrible.
I'm glad at least Marc was able to find something to stabilize his lifestyle a bit and that he won't be getting lost in a crowd anytime soon due to severe dehydration.
I had undiagnosed renal DI for a decade and it’s really only life threatening if we lose access to water. It’s not a fun thing to live with but I was always safe because I was able to self medicate by drinking 10 liters of water per day.
13:09 what a great quote
I’m always so surprised with how much Dr. Mike knows about these rare diseases. There was a video maybe a year ago where he mentioned Alport Syndrome and I was shocked because some nephrologists don’t even know about it. So my contribution to the lists of everyone’s rare diseases is that I have a rare form of Alport Syndrome and I also carry the recessive gene for Polycystic Kidney disease. Just my luck I guess
Well it is most likely scripted. He might not know of it before hand. Or know very little
he still had to study and do research in order to make these videos. Doctors and scientists are always studying and learning new information or even reviewing old information that they learned in school.
Having rare diseases or issues can be so frustrating, to say the least. I have Alkaptonuria but one good benefit to social media is being able to connect with other people around the world.