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
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 :)
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 edit: it reduced to like 40 minutes :)
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
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.
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
As sad as this is, and im sorry for your loss(/g), just thought I'd throw in, there's no reason to clarify "CF in the lungs", as that's only where it really is(other than pancreas as well, but CF is a respiratory disease, so)
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
@@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.
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
@@talkingweevil3172 it is, it's called Trikafta, uses 3 different CTFR modulators (ivacaftor, tezacaftor, elexacaftor) and combines them into 1 medicine to create the most effective CTFR gene modulator to date
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)
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
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. 💕
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. 🙄
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
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
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
It can be bad but it can also be okay depending on the person. Me and my sister both have CF. She had some bad hospitalizations but she is very heathy now and she doesn’t get sick much. Me on the other hand had a scared liver from it and had to have a liver transplant because the entire veins and arteries were clogging up. It’s a scary disease cause you never know what could happen.
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
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.
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)
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 👍🏻
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 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!
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)
I was born prematurely (29 weeks) and for the first year or so I would stop breathing when sleeping (specifically when I'd fall into deep sleep) and I was forced to wake up and I had a monitor on me at night. Crazy
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 very young cousin has cf and we have to be so so careful whenever we visit and if any of us feel slightly sick we can’t see him. i’ve babysat for him before and helped him with all of his supplements and im so impressed with how happy he is otherwise! the sweetest kid with unfortunate circumstances
I had a roommate with fish odor syndrome. And It was a nightmare. I had to get my apartment professionally cleaned when he moved out because basically anything he had ever touched smelled like death. The worst part was that he got mad at me for asking him to do anything about it. To clarify, I wasn't upset with him for having the condition but he would refuse to do anything but occasionally spray some air freshener that he never bought.
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:)))
@@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
@@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?
@@The_chosen_sigma 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.
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.
I have nf1 here and i was genuinely so surprised when i saw it on the thumbnail. I've never seen or meet anyone else who has this, nor have i ever seen any rep in media and i just felt so heard. when i was younger i had a tumor in my left eye and the doctors almost took her away because they were worried it would turn cancerous then it just dipped lmao. I have memories as far as 5 or 6 of being in that damn mri once or even twice (when i was younger) a year! I just turned 18 and i have another one coming up. Im so glad you talked about this in your video, because it doesn´t get mentioned anywhere else :)
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.
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.
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
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.
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.
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
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
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
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.
My mom claimed I had cystic fibrosis as a child, but it obviously wasn't. I just had mucus in my lungs in general. All I took was breathing treatments through an inhaler and that was it. My mom was weird, though.
I have cystic fibrosis and I don’t even cough up mucus much in fact I can’t. CF isn’t actually defined by mucus in lungs like everyone claims but rather thicker mucus in the body.
The fun part about having a rare disease is looking for it in these videos :3 (it wasn’t there, but there’s thousands of rare disorders so I didn’t really expect it)
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.
I have Ehlers Danlos Syndrome (cEDS in my case). It's hell to get diagnosed as most doctors are not trained on it (I suspect many others in my family have it, as it's hereditary, but I'm the first to be diagnosed in my whole family). Thankfully it's not extremely disabling for me (the chronic fatigue and pain are relatively manageable) but my bones and ligaments break like nothing
im in the process of getting tested for this the moment. it would definitely explain lots of issues i’ve had since i was a young kid (im 17). im still waiting for my geneticist appointment but i hope i get the results i need lol. comforting to see strangers that have the thing i might also have!
I first heard of progeria because a classmate had it when we were in third grade. In retrospect, it was like that Crash Test Dummies' "Mmm Mmm Mmm Mmm" song. "Once there was this girl who..."
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Here before this comment gets viral, this comment is 3 likes rn
Are you the Mainly Facts guy?
This very video is very good
"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
I don't think I have any of these
I KNOW I have all of these
Me neither
satire?@@bobbyy-gc2vt
Same
me neither
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
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
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
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
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
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
edit: it reduced to like 40 minutes :)
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
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.
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 ❤
As sad as this is, and im sorry for your loss(/g), just thought I'd throw in, there's no reason to clarify "CF in the lungs", as that's only where it really is(other than pancreas as well, but CF is a respiratory disease, so)
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 :]
Nice! Your cousin is quite a soldier!
That’s an odd thing to be told cause the average life for CF is now 60. (Me and my sister have CF)
@@talkingweevil3172tbf, sonce they're now 40, they were born around 1984, when life expectancy was only 14
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
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
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
Rando on the Internet: "hahahahaha you are now manually breathing 😈😈"
Person with Ondine's Curse:
Apolo juice pfp 🔥🔥
(I purposely misspelled that)
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
This isn’t true, it’s not being used on general public yet. (At least not most people)
@@talkingweevil3172 it is, it's called Trikafta, uses 3 different CTFR modulators (ivacaftor, tezacaftor, elexacaftor) and combines them into 1 medicine to create the most effective CTFR gene modulator to date
@@talkingweevil3172 it's really common anywhere that has a dedicated CF center. I've been on it for years
Uhh he is literally a patient@@talkingweevil3172
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
The main stickman must hate his life
Fr💀
Fr, hes had literally every disease in the entire world
I love the fact that this comment section is slowly becoming a place for people with these disorders to talk about it. Wholesome!
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
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.
Thanks! I have Cf and it feels so cool to see all these people in the comments with it.
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. 💕
I have myotonic dystrophy and have also had physicians google my condition! I hope that gets better for you, though ❤️
Watching this to see if my super rare syndrome is in here
wow, thanks for explaining! i've never heard of it before
@elifishwhat There’s a 2017 movie about a kid with TCS, it’s called Wonder if you’re curious
I really liked it
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
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
The vest is actually not a great option for physio. 😂 Better methods are probably PEP (breathing mask) and autogenic breathing (fancy breaths)
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
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
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
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
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
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
It can be bad but it can also be okay depending on the person. Me and my sister both have CF. She had some bad hospitalizations but she is very heathy now and she doesn’t get sick much. Me on the other hand had a scared liver from it and had to have a liver transplant because the entire veins and arteries were clogging up. It’s a scary disease cause you never know what could happen.
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
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.
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!
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
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
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.
need me a disease ball plushie fr
Next fandom?
@@SpitfireEssa sign me up
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
@skhoylerwhitefan how do you know
@@skylerwhitefan how would you know
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!
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
I was born prematurely (29 weeks) and for the first year or so I would stop breathing when sleeping (specifically when I'd fall into deep sleep) and I was forced to wake up and I had a monitor on me at night. Crazy
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 very young cousin has cf and we have to be so so careful whenever we visit and if any of us feel slightly sick we can’t see him. i’ve babysat for him before and helped him with all of his supplements and im so impressed with how happy he is otherwise! the sweetest kid with unfortunate circumstances
I had a roommate with fish odor syndrome. And It was a nightmare. I had to get my apartment professionally cleaned when he moved out because basically anything he had ever touched smelled like death. The worst part was that he got mad at me for asking him to do anything about it. To clarify, I wasn't upset with him for having the condition but he would refuse to do anything but occasionally spray some air freshener that he never bought.
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!
The videos with rare diseases are soooo good! Please make more!!!
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:)))
4:26 the true definition of
“I have no idea how to breathe” from ASDFMovie
progeria is absolutely fascinating to me: was a hyperfixation of mine before i even knew what hyperfixations were
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
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
Great vid dude I hope you become bigger soon👌
we gettin severe health anxiety wit this one 🔥🔥🔥🔥🔥💯💯💯💯🗣️🗣️🗣️🗣️
I really enjoy this video series. Keep up the good work ❤️
Thank you for summarizing House MD in one video!
You deserve WAY more subscribers
oh wow. I seriously did not expect to see a condition that I have on here
Ummm which one?
@@The_chosen_sigma 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
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.
Great info! I subbed yesterday. I just wished there were some actual photos of said disorders/diseases but I get it.. TH-cam being TH-cam..
I thought this channel had 100k+ subs! It's so good and has a 1 million subscribers editing
Maybe one day!
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)
I have nf1 here and i was genuinely so surprised when i saw it on the thumbnail. I've never seen or meet anyone else who has this, nor have i ever seen any rep in media and i just felt so heard. when i was younger i had a tumor in my left eye and the doctors almost took her away because they were worried it would turn cancerous then it just dipped lmao. I have memories as far as 5 or 6 of being in that damn mri once or even twice (when i was younger) a year! I just turned 18 and i have another one coming up. Im so glad you talked about this in your video, because it doesn´t get mentioned anywhere else :)
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.
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
-Could you grab me a beer?
-Yeah I got you *zip*
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
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 TH-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 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.
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'd like to see the odds of 1 person having ever single one of these diseases simultaneously.
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
Wait wait what? Auto-brewery syndrome? TF2 demomans wierd thing of producing alcohol in his body is real???
Indeed
My friend has this 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
@@Ocoro_ and what?, the possibility that their friend has it its extremely rare but not impossible to come across.
this is hitting youtube like cocaine hit low income households
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
Loved this! Thank you 😊
5:18 “this fishy smelling chemical accumulates in sweat, urine, reproductive fluids-“
Ooookay I think imma go outside for a lil bit.
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 💀
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
I always think İ have all of these
Ör maybe no
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 think you should talk about Angelman’s syndrome. It’s just as rare as the rest of these but not mentioned.
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
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.
My mom claimed I had cystic fibrosis as a child, but it obviously wasn't. I just had mucus in my lungs in general. All I took was breathing treatments through an inhaler and that was it.
My mom was weird, though.
I have cystic fibrosis and I don’t even cough up mucus much in fact I can’t. CF isn’t actually defined by mucus in lungs like everyone claims but rather thicker mucus in the body.
Taking my MCAT this summer plz pray 4 me guys
Great vid this channel a hidden gem fr
Glad you think so!
The fun part about having a rare disease is looking for it in these videos :3
(it wasn’t there, but there’s thousands of rare disorders so I didn’t really expect it)
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.
I have CF but I don’t know all the details like you but I did also have to grow up with hospital visits
gotta catch them all
You don’t want NF
💀
Instant death
I have Ehlers Danlos Syndrome (cEDS in my case). It's hell to get diagnosed as most doctors are not trained on it (I suspect many others in my family have it, as it's hereditary, but I'm the first to be diagnosed in my whole family). Thankfully it's not extremely disabling for me (the chronic fatigue and pain are relatively manageable) but my bones and ligaments break like nothing
im in the process of getting tested for this the moment. it would definitely explain lots of issues i’ve had since i was a young kid (im 17). im still waiting for my geneticist appointment but i hope i get the results i need lol.
comforting to see strangers that have the thing i might also have!
*floppy waves
Hello fellow Zebras!
Can you go every epic disease next? I'd love to see one on every legendary disease sometime too
I first heard of progeria because a classmate had it when we were in third grade. In retrospect, it was like that Crash Test Dummies' "Mmm Mmm Mmm Mmm" song. "Once there was this girl who..."
"what makes me a good demoman?"
Me saying i have fish odor syndrome knowing very well i forgot to brush my teeth for the last week
I love how you can tell how rare they are by whether or not they have a colloquial name
"to get rid of a fish smell, eat fish"
bro, that's ironic