I believe the life expectancy has gotten to age 50. I genuinely believe that within the next few decades, the life expectancy will be raised to the human average. (I have a close friend who has it)
@@ihavenomothandimustscream6387it actually has already- kinda with trikafta the life expectancy can be up to 80 now! i also have cf and when i started trikafta my health skyrocketed and i grew a lot :)
damn.. i can only imagine how tiring it must be to keep having to go get an mri every fuckin year. But hey, you can do something nice for yourself after the mri, that way you can associate the mri and something good so it doesn't get so tiring. I do that sometimes after my uncountable medical appointments and emergency room visits due to chronic pain
I had to get brain surgery and it went well. I have to do these things called angiograms. They cut into an artery and they can see a very detailed map of your brain working.
Hey, i gave Moebious syndrome. Can't move my eyes left to right, but i had a surgery to let me smile. It did more of a number on my limbs. All four are messed up. At least i didn't get the hole in my heart. Could always be worse.
As a person who was diagnosed with CF at a young age, I'm glad it was mentioned as it's a pretty serious condition, and most people will think you're faking. However, one thing incorrect is that we can see other people, we just have to be EXTRA careful to make sure not to go near sick people, or other CF patients. Even the common cold can get us sent to the ICU Edit: Since alot of people with CF are replying to this... CF PATIENTS.... ASEMBLE!!
man i really hate being wired to a machine 1 hour 37 minutes and 59 seconds every day divided into two pieces at day and night and having to take enzimes pills (14 a day) every day
my cousin he has it. luckily for him, he should just avoid sick people, avoid smokers, take SO many pills a day, and breathe through a mask for about 20 minutes a day. i spend alot of time with him, so i really see how tiring it is. it must be so much worse for you and other people with more severe symptoms ❤ my heart goes out to you
I’m glad. Representations of disabilities pretty much only include those afflicted constantly suffering and having an awful life. Although this can be true, a lot of the time, they just have different lives, but it doesn’t mean they’re constantly sad or unable to do anything/
My nephew has a severe type and he is wheelchair bound at only 12. He is overweight due to the steroid therapy which makes people think he is in a wheelchair because of his weight and then look down on him and his mom. The world is overly judgmental
I read a pretty sad account of a man with autobrewery syndrome. He worked as a teacher and kept being disciplined and eventually fired for ‘being drunk on the job’ his partner and family believed he must be lying that he wasn’t drinking and was actually an alcoholic. It wasn’t until he underwent clinical observation where he had no access to alcohol of any kind and it still showed up in his blood that they determined he had the condition
wow, i read about gene therapy as an experimental treatment in highschool and that was only like, 2022, i can't believe the technology advanced that fast. and it was a pretty new class, so its not like the material was just old
An old online friend of mine had cystic fibrosis in the respiratory system, which I only found out about she suddenly passed away in 2020 after contracting covid too. We were only 14 at the time
@@Silly_Wawa_Catit’s true. This is what I found when searching for the origin of the name: “According to French and German mythology, the nymph Ondine/Undine discovered that her husband had committed adultery. Because he had promised his every waking breath to her, she cursed him that so long as he was awake he could breathe, but if he ever fell asleep he would stop breathing and die.” Because of the resemblance of the mythology with the medical condition, I assume they named it after that. Correct me if I’m wrong, though.
My mom's friend claimed to have auto-brewery syndrome to get out of a drunk driving ticket. The crazy thing is it worked, I think the cop was just tired or something and didn't want to go through the trouble of fighting for the ticket and just let her off with an exhausted sigh and a warning.
@@forloco6508 said like a person avoiding responsibility for one's actions. My family member died becouse a drunk person ran into them. Your comment is so insensible and horrible I'm considering reporting it which I never do
Ok real quick. I have CF. As long as you are adamant about taking meds and keeping a healthy lifestyle, you are completely fine. It doesn't mean you should isolate yourself, but you should try to avoid other people who have CF. The advancement in medicine has been life changing for so many people with CF, and people like me can now go to college, get jobs, and live fulfilling lives.
I recall an anecdote about a kid who had it -- I think that's the right disease -- and he wanted so bad to go to camp, but his mom was worried about making sure he got the treatment (in his case, having someone beat his back for a long time every evening, to break up the mucus so it'd come out). Eventually he talked her into letting him go, and when she visited him at the camp she found that some of his fellow campers were helping him with the treatments! One boy had a stopwatch and would call out when to turn him, while another boy was pounding his back like it was a Serious Job that they were all gonna make sure got done right!
@@altymogo3781 It's due to the chance they could already be ill and pass what they have onto another. With CF being a disease that expresses itself differently for each person, while some basic virus may be rough for one- it could be a death sentence for another dealing with CF. (Anyone dealing with CF feel free to correct/elaborate)
I went to kindergarten with a kid who had moebius syndrome, even though you couldn’t see it dude was one of the happiest and cheerful kids in that class
I can go rarer! I had severe premature pulmonary hypertension. Typically seen in the elder population I got diagnosed and put on a oxygen tube full time when I had my tonsils removed at age 6 and the doctor noticed my oxygen level in my blood were not rising above 90 on their own. Ended up having to get a double lung transplant at 14 years old. I could count the amount of people with my exact condition and age range in the USA on my fingers. Many did not survive to adult hood. I have yet to meet a doctor aside from my specialist who already knew my diagnosis was possible before our first meeting.
Damn, that blows!! My condition isn't quite as rare [Ehlers-Danlos Syndrome] but... I know the struggle of finding a physician who knows what to do about you! Hope you're able to get the care you need - stay safe. 💕
Ok so do you mean health OCD, conversion disorder, or factitious disorder (munchausen). 1. Extreme anxiety about minor illnesses and normal bodily sensations 2. Mental issues "converting" into very real physical symptoms with no cause 3. Faking an illness to gain something emotionally
Yeah, every once in a while, some show will have a kid character with NF and it's clear that the writers just picked the name out of a hat. They give the kid all kinds of symptoms that have nothing to do with NF. 🙄
if anyone is reading this comment, i hope your life is peaceful and fulfilled, and anyone with any of these diseases/disorders isn't alone to fight through these
11:30 we had a teacher in middle school with CF, and she was well into her 30s. She had a vibrating vest that she brought in which helped her cough up everything that would accumulate in her lungs overnight. I wonder how she's doing from time to time
Every time I hear of autobrewry syndrome I remember this guy on Reddit describing his insane roommate boofing brewers yeast trying to achieve this disease on purpose
It’s also pretty common to have something very similar amongst premies cause their brains are undercooked (source: I was an NICU baby who’d just. Stop breathing at times)
Actually, they recently figured out SIDS! There's a deficiency in an enzyme that wakes you up when there's danger (e.g. from not breathing); babies who die from SIDS have been demonstrated to (typically) have that deficiency. Not sure how much this might overlap with Ondine's Curse, or what percentage of Ondine's Curse adds to the SIDS deaths.
Wow. I wasn’t actually expecting this video to include my family’s extremely rare condition. blue rubber bleb (Nevus) syndrome Proof of it being so rare: I’m the only comment on here that’s mentioned a medical connection to BRBNS
I have LGMD, a rarer type of muscular dystrophy. Very hard to get health care when less than 2 people in a million have it, so there's noone who knows how to treat it, and those who do are 600km away. It sucks
I would have liked to see the rare types of EDS (every type besides of hEDS) or even just an explanation of EDS in general being that most types are rare to extremely rare
sadly i think hEDS was included because it’s the most common and often diagnosed. (1 in every 5k, potentially more) and only one that’s never diagnosable through genetic testing unlike the other 12 types. and i have hEDS which. sucks but so does my mom.
Yeah, something like Brittle Cornea Syndrome or Periodontal EDS. But at least if someone is interested in rare diseases, it's likely going to show up in their research. Since Hypermobile EDS/Joint Hypermobility Syndrome are more common, that could be a window to learn about the others. But generally, I agree!
I don’t have any of the conditions in this video. But, I have a different rare disease called cold urticaria. I am essentially allergic to the cold. I get hives and have difficulty breathing when it is too cold. It was hard to figure out what was causing the symptoms because they don’t just happen outside (the freezer aisle at the grocery store)
I still remember the day I was given a rather troubling accusation. I wasn't drunk. Are you saying it spontaneously generated in your blood stream? No, I said I wasn't drunk. The officer wouldn't have given me a ride home if I was. I was well below the limit. I was going through withdrawals from my ssri.
My sister has moebius syndrome and one thing that wasn't mentioned although slight mention was she can't really close her eyes properly, meaning she needs a sleep mask, the other thing is she tends to be a messy eater (even though she's an adult) and yet doesn't often clean her face unless someone tells her because she can't feel the food on her face
Dude I seriously love your video, they’re so entertaining and great for a quick watch! I love medicine and I think these videos are great! Keep up the good work 👍🏻
This channel is so underrated and is straight to the point with these explanations. Love this content. Keep it up and I’m sure you’ll make it to 1M subs anytime soon! (I found this channel a couple days ago and couldn’t have the time to comment on a video)
8:10 im imagining a red blood cell coming to unknowingly talk to a P pemnigus and get decked while cancer runs around killing and comes to them to beat on the red blood cell.
@@tritonwe8937usually family genetic history! Often times, there will be evidence that one parent has passed on copy of the gene, and that the other parent did not pass on a copy. That's how it is in my family with colorblindness (of which, I am a carrier for it). Otherwise, genetic testing can reveal this for individuals who may be at risk of having kiddos
your videos are so fun to watch! (even tho the video's topic isnt fun at all the way you make your videos is very dynamic and unique!) keep up the good work!
Great educatinal video!! Easy to understand and fast passed enough that one doesn't get bored while its packed with information, great starting point for one who wants to start their research for this topic. The one thing i would change tho it would be more inclusive illustrations as many rashes and other skin conditions apper differently on darker skin and i think a drawing along side their white skinned counterpart would be great!! Other than that really good video hope you will get the registration you deserve:)))
@@phoebefowler That is weird. Everything I read said it was super important to treat, even if it's mild. Was it a home apnea test or a polysomnography?
@@love.within.chaos0917 neurofibromatosis type 1. Never had any serious effects besides a small growth in my ear that I had removed as a child. video is right that it can be devastating, but luckily for the majority of people that have it, we get very little to no negative effects.
Am I the only person who finds it annoying that these diseases are named usually after the doctor who discovered them, rather than the person who has to suffer from it? I mean come on, the doctor is the one getting paid and everything else. At the very least let the person who has to suffer from it get a little credit! Unless I’m wrong…
imagine being the guy who was ought to be remembered by the illness they had, being sick is not pretty. there is no virtue in being sick and neither do you get paid for being sick. I have no single idea to as how "getting paid" can remove you from the privilege of naming anything. its not like all the people who were sick with previously unnamed illness were denied in getting paid. + the credit should go to the doctor because their profession is much more straining and stressful than that of an averege Joe given how much training there is and how little break there is.
the patient often isn't old enough to make such decisions, and parents often don't want their children to be internationally popular, as that raises the risks of assassination and stalking.
There is a greater push in modern times to name diseases after their causes or their resulting condition (ie "cystic fibrosis"). Consider that many diseases like those in the video where discovered before the 21st century or in countries outside of America, so they had different ethics and norms.
Makes me wonder why human euthanasia (even with consent) is still considered unethical. Like I think making people suffer against their own will is more unethical.
the real danger of human euthanasia being legal is that when society considers you a burden, they may offer you euthanasia as a treatment but nothing else. canada has been an interesting example regarding this recently (it’s legal there)
@@scrungyes I’ve heard they are considered offering mentally ill people euthanasia. Just imagine you have a depressed child and they get a letter asking them if they would like to kill themselves. Absolutely disgusting.
@@scrung Exactly this. And for people who don’t have conditions that affect their life span (such as craniofacial deformities) the mistreatment faced due to ableism may cause people to seek out euthanasia. It’s deemed to be a solution for suffering people, but the idea of what counts as suffering is broad. It’s like what you said, where people seek euthanasia because no medical cure is available. But instead of medical cure, it’s societal perception of disabled people. Both can be sought out or changed instead of resorting to death.
idk it sounds horrifying to me. you wouldn't be able to leave the house, interact with others, talk, exercise, or have sexual feelings. you'd have to basically live in the shower eating charcoal, which would also mean you can't take other medications to help the social anxiety. imagine how bad the periods would smell.
I have neurofibromatosis and luckily it's on the less severe side. I've never had a brain tumour and i only have a few growths under my skin and I have some freckling around my body.
Many of these are antiquated terms that nobody uses anymore. Like Ondine's Curse is called Central Hypoventilation Syndrome because doctors figured out a disease is not a curse. Others you mention are merely symptoms of a larger problem. And that's just the ones in the thumbnail.
Yo next time you do a video on diseases could you do one on ‘erythema nodosum’? I have it and it sucks alot (basically a disease where you get large red bumps on your arms and legs that hurt alot, Cause of erythema nodosum is mostly at random, from diseases or even stress. Oh and it stays for life :D
When I was born the doctors diagnosed me with neurofibrotosis. I was really smart so at the age of 2 or 1 the doctors said I didn’t thankfully. I only have ligios syndrome, which causes spots on my skin. The spots are on my back so no one notices it
I have a urea cycle disorder and had to get a transplant at age 17. I also have some unknown muscle disorder and im going to have to get a muscle biopsy. My muscle problems include muscles on my arms and legs and abdomen as well as internal muscles that control organ function. My pulmonologist wants to send me to mayo clinic but i had to tell him that unfortunately thats unrealistic for me due to as i cant drive and live too far away. Love that man though. He saved my life.
Just presented some research we've been doing on Duchenne at a conference. It's nice to see videos and media that highlight this (and other) rare diseases, so that people can be aware of some of the challenges and difficulties unfortunate members in society have to face.
The title is wrong. This video doesn't go over _EVERY_ rare disease. It just goes over a few of them. I personally know multiple people with rare diseases and have a rare disease myself, none of which were mentioned. I have Kienböck's Disease, and know someone with Hydrocephalus, someone with Grover's Disease, and someone with Wilson's Disease. All of those are rare diseases.
had a relative with systemic scleroderma, which is extremely uncommon. Like one in 10,000 rare. Not here. Also definitely underresearched considering how much its sister disease lupus is (at least relative to it)
You're right, I think over 7K diseases are considered rare diseases, there's likely many more that aren't discoverable. I don't think it's possible to cover every rare disease but the title is misleading.
I have neurofibromatosis type 1, i have a few neufibromas in my head, mine are not dangerous but somtimes they are anoying cause it feels very weird when something or someone touch them
i was diagnosed with cystic fibrosis at 10 months! double delta 508, technically the "worst" strain, but i've been lucky to have medicines that make it a lot less of an issue for me than it could be. Though i'd be lying if i said hospital stays weren't regular growing up, I still consider myself among the lucky ones to be able to live a regular life for the most part.
My brother has NF type 1 which he got from my dad who has Schwannomatosis (another form of NF). It is caused by a faulty gene that has a 50% chance to be passed down from parent to child. Along with the symptoms mentioned, people with NF 1 tend to also have an enlarged head, and NF 1 had also been linked with ADHD. Other forms of NF do exist such as Schwannomatosis which can lead to pain, numbness, and muscle loss. Another form is NF type 2 which can lead to hearing loss and balance issues.
Need to do a part 2. There are a lot more of these out there. Like brittle bone disorder. I grew up a half a block from a family that had more then one child with this genetic disorder in different severities. And Porphyria XP
For a second I thought I had Fish Oder syndrome, but I actually have something worse. over the last few days, someone at my school said I smell like fish. I tried getting the smell off, wherever it was, but I couldn't and now I just smell like fish, sometimes. It's weird. (No, the smell is not in my breath or sweat or anything that The Evaluator said, I just randomly smell like fish.)
I almost misread that there was Morbius Syndrome 💀
Bro I thought there WAS a morbius syndrome 💀💀💀💀💀💀💀
Im morbing... aughhhhhhhhh!!!
@@N0v4.fr05t.IT’S MORBIN TIME
Hello.
@@tardlord7622 heheheha
I don't think I have any of these
I KNOW I have all of these
Me neither
satire?@@bobbyy-gc2vt
Same
me neither
"Sir, how many bottles of alcohol did you drink?"
"A sandwich."
“Sandvich”
One dude who suffered from autobrewery syndrome was Italian and he said curing it was painful.
"nice hustle tons of drunk, next time eat a salad"@@SRobot08
Doesnt demoman canonically have auto brewery syndrome? @@SRobot08
He’s literally demoman
Fun fact, my dad actually has auto-brewery syndrome. He’s been medically diagnosed and it’s been affecting him for almost 10 years
Thats not very fun
So is it like he's always drunk?
@@KaitouKaiju not exactly… it used to be that way but he’s been getting treatment
Could he avoid it but not eating carbs or sugars?
@@NeostormXLMAX carbs are like half the food on this planet. It’s impossible to avoid them
Had a neighbor with cystic fibrosis. They thought she’d pass away by 18. She’s in her mid twenties now and doing well!
I believe the life expectancy has gotten to age 50. I genuinely believe that within the next few decades, the life expectancy will be raised to the human average. (I have a close friend who has it)
@@ihavenomothandimustscream6387it actually has already- kinda
with trikafta the life expectancy can be up to 80 now!
i also have cf and when i started trikafta my health skyrocketed and i grew a lot :)
That is very cool
That she lived so long i mean
yay!!!! :D
Someone with neurofibromatosis here. it is NOT fun. i get forced to have an mri every year
Some of my earliest memories were in that freaking machine. I'm way passed due for an mri
damn.. i can only imagine how tiring it must be to keep having to go get an mri every fuckin year. But hey, you can do something nice for yourself after the mri, that way you can associate the mri and something good so it doesn't get so tiring. I do that sometimes after my uncountable medical appointments and emergency room visits due to chronic pain
My earliest memory wasn’t signing Disney songs, or seeing a my new sibling, no no no, getting a IV at the hospital, because of NF.
I know about my yearly MRIs too. Actually, I ended up getting diagnosed with Moya Moya so they saved me.
I had to get brain surgery and it went well. I have to do these things called angiograms. They cut into an artery and they can see a very detailed map of your brain working.
Hey, i gave Moebious syndrome. Can't move my eyes left to right, but i had a surgery to let me smile. It did more of a number on my limbs. All four are messed up. At least i didn't get the hole in my heart. Could always be worse.
it's nice that you could see the bright side. I hope everything goes well for you 🫶
Same!
orochimaru
Man, that sounds incredibly taxing, but I'm glad you can smile now x
Did you turn into Morbius after surgery
my cousin has cystic fibrosis and was told she wouldn’t live past 13, she is now 40 and thriving!
that’s good
Yay! That's so great :]
As a person who was diagnosed with CF at a young age, I'm glad it was mentioned as it's a pretty serious condition, and most people will think you're faking. However, one thing incorrect is that we can see other people, we just have to be EXTRA careful to make sure not to go near sick people, or other CF patients. Even the common cold can get us sent to the ICU
Edit: Since alot of people with CF are replying to this... CF PATIENTS.... ASEMBLE!!
man i really hate being wired to a machine 1 hour 37 minutes and 59 seconds every day divided into two pieces at day and night and having to take enzimes pills (14 a day) every day
I have it too, man, luckily I’m in quite a good condition, best of luck to you dude
gl to u 3. stay strong we believe in you
it must be very tiring indeed. Just have in mind that you guys are fuckin awesome alright? you 3 deserve living the best lives ever
my cousin he has it. luckily for him, he should just avoid sick people, avoid smokers, take SO many pills a day, and breathe through a mask for about 20 minutes a day. i spend alot of time with him, so i really see how tiring it is. it must be so much worse for you and other people with more severe symptoms ❤ my heart goes out to you
my brother has muscular dystrophy. he’s in his mid twenties and he’s doing pretty good despite his condition
It's nice that he is doing good! I hope he can stay like this, good with life and well.
i have a friend with this. hes 17 and also doing well!
I’m glad. Representations of disabilities pretty much only include those afflicted constantly suffering and having an awful life. Although this can be true, a lot of the time, they just have different lives, but it doesn’t mean they’re constantly sad or unable to do anything/
morbius
My nephew has a severe type and he is wheelchair bound at only 12. He is overweight due to the steroid therapy which makes people think he is in a wheelchair because of his weight and then look down on him and his mom. The world is overly judgmental
Love these types of channels. No intro, just straight into it. Thanks!
Same! And it's so simple
Agreed they are soooo good!
do you even care about the lack of love in the world right now?
@@oni793 what does that have to do with anything
Maybe cause it’s A l
I read a pretty sad account of a man with autobrewery syndrome. He worked as a teacher and kept being disciplined and eventually fired for ‘being drunk on the job’ his partner and family believed he must be lying that he wasn’t drinking and was actually an alcoholic. It wasn’t until he underwent clinical observation where he had no access to alcohol of any kind and it still showed up in his blood that they determined he had the condition
Hey, Cystic Fibrosis patient here, for treatment there's also gene modulation therapy that can effectively mitigate the risk of further organ damage
wow, i read about gene therapy as an experimental treatment in highschool and that was only like, 2022, i can't believe the technology advanced that fast. and it was a pretty new class, so its not like the material was just old
An old online friend of mine had cystic fibrosis in the respiratory system, which I only found out about she suddenly passed away in 2020 after contracting covid too. We were only 14 at the time
i'm really sorry for your loss, i wish people didn't die young... i hope you're doing all right
Sending you nothing but supportive vibes and hopes for a brighter tomorrow.
im so sorry for your loss. i cant even imagine how devastating losing a friend like that could be.. my best wishes to you and her family ❤
if anyone was curious, Ondine's Curse is named after the same mythological creature that Undyne from Undertale is. Undine are a kind of water nymph
I can’t tell if he’s telling the truth or if this is satire
@@Silly_Wawa_Catit’s true.
This is what I found when searching for the origin of the name: “According to French and German mythology, the nymph Ondine/Undine discovered that her husband had committed adultery. Because he had promised his every waking breath to her, she cursed him that so long as he was awake he could breathe, but if he ever fell asleep he would stop breathing and die.” Because of the resemblance of the mythology with the medical condition, I assume they named it after that. Correct me if I’m wrong, though.
@@anda_panda911 thx bro
Thank god im not weird for thinking of ut first
It's central sleep apnea
WE GOT DISEASEBALLS NOW?!
fr
Diseaseballs does not sound fun
I forgot countryballs were a thing….OH SCHIẞE ITS REICHTANGLE
LOL
That's what I'm saying
Watching this to see if my super rare syndrome is in here
wow, thanks for explaining! i've never heard of it before
My mom's friend claimed to have auto-brewery syndrome to get out of a drunk driving ticket. The crazy thing is it worked, I think the cop was just tired or something and didn't want to go through the trouble of fighting for the ticket and just let her off with an exhausted sigh and a warning.
Note to self
Do this lmao
@@neetard7360 The fact you make a note of this instead not to drive drunk says all about what kind of person you are
@@filipgaecki5480 I'm a silly jokester what can I say 🤪
@@filipgaecki5480nothings wrong with drunk driving. it’s the drunk crashers you gotta worry about.
@@forloco6508 said like a person avoiding responsibility for one's actions. My family member died becouse a drunk person ran into them. Your comment is so insensible and horrible I'm considering reporting it which I never do
Ok real quick. I have CF. As long as you are adamant about taking meds and keeping a healthy lifestyle, you are completely fine. It doesn't mean you should isolate yourself, but you should try to avoid other people who have CF. The advancement in medicine has been life changing for so many people with CF, and people like me can now go to college, get jobs, and live fulfilling lives.
I recall an anecdote about a kid who had it -- I think that's the right disease -- and he wanted so bad to go to camp, but his mom was worried about making sure he got the treatment (in his case, having someone beat his back for a long time every evening, to break up the mucus so it'd come out). Eventually he talked her into letting him go, and when she visited him at the camp she found that some of his fellow campers were helping him with the treatments! One boy had a stopwatch and would call out when to turn him, while another boy was pounding his back like it was a Serious Job that they were all gonna make sure got done right!
Why do you avoid others with your condition
@@altymogo3781 did you not watch the video he literally explained why in the video
@@altymogo3781 It's due to the chance they could already be ill and pass what they have onto another. With CF being a disease that expresses itself differently for each person, while some basic virus may be rough for one- it could be a death sentence for another dealing with CF. (Anyone dealing with CF feel free to correct/elaborate)
@@DanielWilczek-nu7ffthat's exactly right
I went to kindergarten with a kid who had moebius syndrome, even though you couldn’t see it dude was one of the happiest and cheerful kids in that class
I can go rarer! I had severe premature pulmonary hypertension. Typically seen in the elder population I got diagnosed and put on a oxygen tube full time when I had my tonsils removed at age 6 and the doctor noticed my oxygen level in my blood were not rising above 90 on their own. Ended up having to get a double lung transplant at 14 years old. I could count the amount of people with my exact condition and age range in the USA on my fingers. Many did not survive to adult hood. I have yet to meet a doctor aside from my specialist who already knew my diagnosis was possible before our first meeting.
Damn, that blows!! My condition isn't quite as rare [Ehlers-Danlos Syndrome] but... I know the struggle of finding a physician who knows what to do about you! Hope you're able to get the care you need - stay safe. 💕
Hypochondriacs are about to have a FIELD day with this video
IM ANXIOUSLY GOOGLING EVERYTHING NOW😭😭😭
sometimes they piss me off lol
we are 🤡
hypochondriacs running to buy a lifetime supply of beer to claim to have the first one
Ok so do you mean health OCD, conversion disorder, or factitious disorder (munchausen).
1. Extreme anxiety about minor illnesses and normal bodily sensations
2. Mental issues "converting" into very real physical symptoms with no cause
3. Faking an illness to gain something emotionally
The main stickman must hate his life
Fr💀
I actually have NF 1
I was so surprised to see this mentioned. This is one of the only channels i seen that talked about it
Ikr?? I got so happy
I saw it in the thumbnail and had to watch. It’s not somethin we’ll know. I never talk about cuz it can be hard to explain.
Yeah, every once in a while, some show will have a kid character with NF and it's clear that the writers just picked the name out of a hat. They give the kid all kinds of symptoms that have nothing to do with NF. 🙄
Yeah, I was surprised, too because there is little to no information about that topic. Me, my mom and my late grandma have NF1
Same here. I clicked the video so fast when i saw it
if anyone is reading this comment, i hope your life is peaceful and fulfilled, and anyone with any of these diseases/disorders isn't alone to fight through these
same!
thanks
I just wanna try a schnozberry.
Rando on the Internet: "hahahahaha you are now manually breathing 😈😈"
Person with Ondine's Curse:
11:30 we had a teacher in middle school with CF, and she was well into her 30s. She had a vibrating vest that she brought in which helped her cough up everything that would accumulate in her lungs overnight. I wonder how she's doing from time to time
Poor lady :( Glad she had a way to reduce the stress though
i had that too lol i always wanted that vest lol
My aunt has CF, she's in her 60s
I have CF, also the vest, which can I say it's hard to travel with? Like, it's so heavy
I love the fact that this comment section is slowly becoming a place for people with these disorders to talk about it. Wholesome!
Achievement Unlocked : Breath Manually
Debuff added*
WHY, WHY WOULD YOU DO THIS TO MEEEEE
*breathe
PetaQ!
First one is just demoman
tf2 reference?
@@maristodal4119what makes me a good demoman?
If i were a bad demoman I won't be sitting here discussing
Imagine getting pulled over by the cops
Ayo! I was just about to say that!
my mum actually knows someone who has a daughter with CF, she's pretty much bedridden because of how severe it is. the thing is bloody terrifying
Timestamp
0:00 Auto Brewery syndrome
1:07 Mobius syndrome
2:06 Fibrodysplasia ossificans progressiva
3:00 Progeria syndrome
4:05 Andersen-Tawil syndrome (Andi's curse)
5:52 Fish odor syndrome (Trimethylaminuria)
4:40 Erdheim-Chester disease
6:44Blue rubber bleb nevus syndrome
7:41 Paraneoplastic pemphigus
8:50 Stuve-Wiedemann syndrome
9:39 Neurofibromatosis type 1
10:30 Cystic fibrosis
11:54 Duchenne muscular dystrophy
11:03 Sneddon syndrome
Sneedon syndrome is 13:00
Every time I hear of autobrewry syndrome I remember this guy on Reddit describing his insane roommate boofing brewers yeast trying to achieve this disease on purpose
Ondine’s Curse is essentially SIDS Sudden Infant Death Syndrome
It likely does cause a handful of SIDS cases. At least Ondine's Curse can be mitigated.
@@flickcentergaming680 There are actually quite a few papers that claim it is a major cause of SIDS
It’s also pretty common to have something very similar amongst premies cause their brains are undercooked (source: I was an NICU baby who’d just. Stop breathing at times)
Actually, they recently figured out SIDS! There's a deficiency in an enzyme that wakes you up when there's danger (e.g. from not breathing); babies who die from SIDS have been demonstrated to (typically) have that deficiency. Not sure how much this might overlap with Ondine's Curse, or what percentage of Ondine's Curse adds to the SIDS deaths.
Seems more like a severe form of central sleep apnea to me.
Wow. I wasn’t actually expecting this video to include my family’s extremely rare condition. blue rubber bleb (Nevus) syndrome
Proof of it being so rare: I’m the only comment on here that’s mentioned a medical connection to BRBNS
I have LGMD, a rarer type of muscular dystrophy. Very hard to get health care when less than 2 people in a million have it, so there's noone who knows how to treat it, and those who do are 600km away. It sucks
i have the auto brewery syndrome and when you're 13 and acting drunk everybody just assumes you didnt get enough sleep lmao
lol
no u dont
need me a disease ball plushie fr
Next fandom?
@@SpitfireEssa sign me up
I would have liked to see the rare types of EDS (every type besides of hEDS) or even just an explanation of EDS in general being that most types are rare to extremely rare
sadly i think hEDS was included because it’s the most common and often diagnosed. (1 in every 5k, potentially more) and only one that’s never diagnosable through genetic testing unlike the other 12 types.
and i have hEDS which. sucks but so does my mom.
Yeah, something like Brittle Cornea Syndrome or Periodontal EDS. But at least if someone is interested in rare diseases, it's likely going to show up in their research. Since Hypermobile EDS/Joint Hypermobility Syndrome are more common, that could be a window to learn about the others. But generally, I agree!
I don’t have any of the conditions in this video. But, I have a different rare disease called cold urticaria. I am essentially allergic to the cold. I get hives and have difficulty breathing when it is too cold. It was hard to figure out what was causing the symptoms because they don’t just happen outside (the freezer aisle at the grocery store)
Sorry chap, I guess your disease is not rare enough to cut it. Try harder in your next life 😂
Oh wow! Is there treatment for this or do you just have to avoid being cold?
i have this too
@@AnticitizenOnei just avoid being cold
@@AnticitizenOneif i get a huge rash or something though i take benadryl
I still remember the day I was given a rather troubling accusation. I wasn't drunk. Are you saying it spontaneously generated in your blood stream? No, I said I wasn't drunk. The officer wouldn't have given me a ride home if I was. I was well below the limit. I was going through withdrawals from my ssri.
My sister has moebius syndrome and one thing that wasn't mentioned although slight mention was she can't really close her eyes properly, meaning she needs a sleep mask, the other thing is she tends to be a messy eater (even though she's an adult) and yet doesn't often clean her face unless someone tells her because she can't feel the food on her face
Dude I seriously love your video, they’re so entertaining and great for a quick watch! I love medicine and I think these videos are great! Keep up the good work 👍🏻
Agreed
This channel is so underrated and is straight to the point with these explanations. Love this content. Keep it up and I’m sure you’ll make it to 1M subs anytime soon!
(I found this channel a couple days ago and couldn’t have the time to comment on a video)
there are 100+ channels that use this format to explain these
Weird how most of us here wouldn't want to watch this if it was shown in a classroom but we want to watch this on our own
8:10 im imagining a red blood cell coming to unknowingly talk to a P pemnigus and get decked while cancer runs around killing and comes to them to beat on the red blood cell.
I have Neurofibomatosis
I have too
I have Duchenne Muscular Dystrophy. Sorry to hear that leatnukelerbombs
Me too
same
Same I was surprised to see it In the list
progeria is absolutely fascinating to me: was a hyperfixation of mine before i even knew what hyperfixations were
another thing about (morbius) moebius syndrome is that some people need special feeding tubes to eat
I'm a carrier of Cystic Fibrosis, but not a gene owner
Good for you not getting a very bad disease.
@@_thisnameistaken He is a carrier. So you are right.
@@madcat1914 let’s just hope he doesn’t reproduce
How do you even know that?
@@tritonwe8937usually family genetic history! Often times, there will be evidence that one parent has passed on copy of the gene, and that the other parent did not pass on a copy. That's how it is in my family with colorblindness (of which, I am a carrier for it). Otherwise, genetic testing can reveal this for individuals who may be at risk of having kiddos
Fish odor syndrome also makes sweat crystallize over time,blue colored,100 % pure,and powerfull against depression
Who the hell would willing use sweat to help depression
Hey, i guess you probably didnt know, but the Molecule you showed at the Fish odor syndrome section was not Trimethylamine. NMe3 is only C3H9N.
(Good video)
your videos are so fun to watch! (even tho the video's topic isnt fun at all the way you make your videos is very dynamic and unique!) keep up the good work!
Glad you like them!
Wait wait what? Auto-brewery syndrome? TF2 demomans wierd thing of producing alcohol in his body is real???
Indeed
My friend has this syndrome
Demoman has auto brewery syndrome
@@Thefox0922right, its literally a 1:80000000 ratio for those who have this
@@Ocoro_ yeah. He told me he was diagnosed with it. Dont know for sure but he told me
The videos with rare diseases are soooo good! Please make more!!!
Great vid dude I hope you become bigger soon👌
Great educatinal video!! Easy to understand and fast passed enough that one doesn't get bored while its packed with information, great starting point for one who wants to start their research for this topic. The one thing i would change tho it would be more inclusive illustrations as many rashes and other skin conditions apper differently on darker skin and i think a drawing along side their white skinned counterpart would be great!! Other than that really good video hope you will get the registration you deserve:)))
I really enjoy this video series. Keep up the good work ❤️
4:26 the true definition of
“I have no idea how to breathe” from ASDFMovie
Can you please make a video where you talk about Marfan Syndrome. Would be nice cause my friend has that and i see almost no one talk about it
Most of the videos on UA-cam are ~8 years old.
My friend left me
@@theRealMaMoI'm so sorry to hear that... But I'm glad he had such a good friend. Please take care of yourself. 💖
I have something like Ondines curse. Sometimes I forget to breathe throughout the day when I'm doing things. I think that's why I have sleep apnea.
Central sleep apnea? I've been reading about sleep apnea because I'm getting tested for it soon.
@@vivianloney yeah, I got tested a while back and it said I have a mild case but they never called me back so I can do something about it.
@@phoebefowler That is weird. Everything I read said it was super important to treat, even if it's mild. Was it a home apnea test or a polysomnography?
@@vivianloney It was a polysomnograph
You deserve WAY more subscribers
this is hitting youtube like cocaine hit low income households
My dude forgot to add primary amebic meningoencephalitis 💀
That is caused by a pathogen. He should've specified congenital rare diseases.
bro really forgot to include autoimmune polyendocrinopathy candidiasis ectodermal dystrophy 💀
oh wow. I seriously did not expect to see a condition that I have on here
Ummm which one?
@@love.within.chaos0917 neurofibromatosis type 1. Never had any serious effects besides a small growth in my ear that I had removed as a child. video is right that it can be devastating, but luckily for the majority of people that have it, we get very little to no negative effects.
@@taylordiachenko684same dude
Mine gives my constant pain and I'm way overdue for an mri
Thank you for summarizing House MD in one video!
I thought this channel had 100k+ subs! It's so good and has a 1 million subscribers editing
Maybe one day!
we gettin severe health anxiety wit this one 🔥🔥🔥🔥🔥💯💯💯💯🗣️🗣️🗣️🗣️
Am I the only person who finds it annoying that these diseases are named usually after the doctor who discovered them, rather than the person who has to suffer from it? I mean come on, the doctor is the one getting paid and everything else. At the very least let the person who has to suffer from it get a little credit! Unless I’m wrong…
imagine being the guy who was ought to be remembered by the illness they had, being sick is not pretty. there is no virtue in being sick and neither do you get paid for being sick.
I have no single idea to as how "getting paid" can remove you from the privilege of naming anything. its not like all the people who were sick with previously unnamed illness were denied in getting paid.
+ the credit should go to the doctor because their profession is much more straining and stressful than that of an averege Joe given how much training there is and how little break there is.
the patient often isn't old enough to make such decisions, and parents often don't want their children to be internationally popular, as that raises the risks of assassination and stalking.
There is a greater push in modern times to name diseases after their causes or their resulting condition (ie "cystic fibrosis"). Consider that many diseases like those in the video where discovered before the 21st century or in countries outside of America, so they had different ethics and norms.
@CultReport, why would people assassinate over a disease name?
I wouldn't want to be known for my disease tbh
Me saying i have fish odor syndrome knowing very well i forgot to brush my teeth for the last week
Loved this! Thank you 😊
NF1 sufferer here and we definitely don't need surgery every year lol just yearly checkups
Makes me wonder why human euthanasia (even with consent) is still considered unethical. Like I think making people suffer against their own will is more unethical.
the real danger of human euthanasia being legal is that when society considers you a burden, they may offer you euthanasia as a treatment but nothing else. canada has been an interesting example regarding this recently (it’s legal there)
@@scrungyes I’ve heard they are considered offering mentally ill people euthanasia. Just imagine you have a depressed child and they get a letter asking them if they would like to kill themselves. Absolutely disgusting.
@@scrung Exactly this. And for people who don’t have conditions that affect their life span (such as craniofacial deformities) the mistreatment faced due to ableism may cause people to seek out euthanasia. It’s deemed to be a solution for suffering people, but the idea of what counts as suffering is broad. It’s like what you said, where people seek euthanasia because no medical cure is available. But instead of medical cure, it’s societal perception of disabled people. Both can be sought out or changed instead of resorting to death.
Its a slippery slope that leads to horrific results
@@scrung That VA audio still upsets me so so much. Such a dark path the Canadian VA's taken.
Great info! I subbed yesterday. I just wished there were some actual photos of said disorders/diseases but I get it.. UA-cam being UA-cam..
gotta catch them all
You don’t want NF
💀
Instant death
Taking my MCAT this summer plz pray 4 me guys
I always think İ have all of these
Ör maybe no
Great vid this channel a hidden gem fr
Glad you think so!
i like how there's all these diseases with horrifying and often lethal effects and then there's "fish odor disease" which makes you stinky
That will impact someone's life though
idk it sounds horrifying to me. you wouldn't be able to leave the house, interact with others, talk, exercise, or have sexual feelings. you'd have to basically live in the shower eating charcoal, which would also mean you can't take other medications to help the social anxiety. imagine how bad the periods would smell.
I have neurofibromatosis and luckily it's on the less severe side. I've never had a brain tumour and i only have a few growths under my skin and I have some freckling around my body.
Many of these are antiquated terms that nobody uses anymore. Like Ondine's Curse is called Central Hypoventilation Syndrome because doctors figured out a disease is not a curse. Others you mention are merely symptoms of a larger problem. And that's just the ones in the thumbnail.
it's the colloquial names. like how most people know yersinia pestis better as plague or black death
Yo next time you do a video on diseases could you do one on ‘erythema nodosum’? I have it and it sucks alot (basically a disease where you get large red bumps on your arms and legs that hurt alot, Cause of erythema nodosum is mostly at random, from diseases or even stress. Oh and it stays for life :D
When I was born the doctors diagnosed me with neurofibrotosis. I was really smart so at the age of 2 or 1 the doctors said I didn’t thankfully. I only have ligios syndrome, which causes spots on my skin. The spots are on my back so no one notices it
Tip for video: show some real life pictures of some of the visual diseases. I just had to look everything up on Google images out of curiosity
*_you've again woke up the countryball community_*
I have been awakened
I have a urea cycle disorder and had to get a transplant at age 17. I also have some unknown muscle disorder and im going to have to get a muscle biopsy. My muscle problems include muscles on my arms and legs and abdomen as well as internal muscles that control organ function. My pulmonologist wants to send me to mayo clinic but i had to tell him that unfortunately thats unrealistic for me due to as i cant drive and live too far away. Love that man though. He saved my life.
Just presented some research we've been doing on Duchenne at a conference. It's nice to see videos and media that highlight this (and other) rare diseases, so that people can be aware of some of the challenges and difficulties unfortunate members in society have to face.
The title is wrong. This video doesn't go over _EVERY_ rare disease. It just goes over a few of them. I personally know multiple people with rare diseases and have a rare disease myself, none of which were mentioned. I have Kienböck's Disease, and know someone with Hydrocephalus, someone with Grover's Disease, and someone with Wilson's Disease. All of those are rare diseases.
Make a video then tf
had a relative with systemic scleroderma, which is extremely uncommon. Like one in 10,000 rare. Not here. Also definitely underresearched considering how much its sister disease lupus is (at least relative to it)
How would they cover EVERY rare disease?
You're right, I think over 7K diseases are considered rare diseases, there's likely many more that aren't discoverable. I don't think it's possible to cover every rare disease but the title is misleading.
@@mroof523 Or, now hear me out, people could actually title their videos accurately?
I have neurofibromatosis type 1, i have a few neufibromas in my head, mine are not dangerous but somtimes they are anoying cause it feels very weird when something or someone touch them
i was diagnosed with cystic fibrosis at 10 months! double delta 508, technically the "worst" strain, but i've been lucky to have medicines that make it a lot less of an issue for me than it could be. Though i'd be lying if i said hospital stays weren't regular growing up, I still consider myself among the lucky ones to be able to live a regular life for the most part.
My brother has NF type 1 which he got from my dad who has Schwannomatosis (another form of NF). It is caused by a faulty gene that has a 50% chance to be passed down from parent to child. Along with the symptoms mentioned, people with NF 1 tend to also have an enlarged head, and NF 1 had also been linked with ADHD. Other forms of NF do exist such as Schwannomatosis which can lead to pain, numbness, and muscle loss. Another form is NF type 2 which can lead to hearing loss and balance issues.
I think you should talk about Angelman’s syndrome. It’s just as rare as the rest of these but not mentioned.
"what makes me a good demoman?"
Need to do a part 2.
There are a lot more of these out there.
Like brittle bone disorder.
I grew up a half a block from a family that had more then one child with this genetic disorder in different severities.
And
Porphyria
XP
This chanel slaps
Amazing recommendation
I have neurofibromatosis and that was not the best description. Anyways nice to be in the video regardless.
Only people who have it or expert’s can explain it well.
@@EPICSTUFZ True, like the main symptom of the condion was chosen to be mentioned as a side effect
For a second I thought I had Fish Oder syndrome, but I actually have something worse.
over the last few days, someone at my school said I smell like fish. I tried getting the smell off, wherever it was, but I couldn't and now I just smell like fish, sometimes. It's weird. (No, the smell is not in my breath or sweat or anything that The Evaluator said, I just randomly smell like fish.)
you should talk about dentinogenosis imperfecta!!
Ive heard of some of these purely by watching House but they never explained what they actually were in detail so Im glad for this😔
Bro those look like countryballs
Frft