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 :)
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
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
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 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.
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
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
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. 💕
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
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)
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
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.
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 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 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
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 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 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)
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
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 👍🏻
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.
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.
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 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.
@@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!
@@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?
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.
@@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.
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:)))
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.
I remember reading a crazy article a while ago about a guy who had auto brewery syndrome. How he got pulled over by the cops and they found alcohol in his system, he was shocked as he said he never drank ever and he would try to explain this to the cops. However they just took him as an asshole who was lying about drinking and driving, treating him badly. They would come to find out he had the syndrome
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.
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 :)
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.
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
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.
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.
There’s Prader Willi syndrome where your brain tells you you’re hungry 24/7 even though your stomach is actually full, not only that but you burn calories slower leading to fast weight gain even if you consume 1200 or less calories
I have NF1 my self. I’m 22 currently, it’s thankfully be no so severe. Do have spots and freckling. Also a few soft growths. A lil learning problems. But for now that’s all I’m aware of. I know NF2 doesn’t have a very long life expectancy and is also pretty painful.
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
My friends older brother has cystic fribrosis, he's in his late twenties now as he has fortunately been able to access all medications and treatments available and was diagnosed very young. He's missing most of his lungs due to damage but he's going pretty good for his condition as a certain virus that effected peoples respiratory did not manage to knock him off : )
Just to let you know despite common belief Cf does not just effect your respiratory meaning some have lung problems while others have more issues with liver.
Join us discord.gg/53msuc757H
Here before this comment gets viral, this comment is 3 likes rn
Are you the Mainly Facts guy?
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
"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
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
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
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
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 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)
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
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 ❤
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
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
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
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
Rando on the Internet: "hahahahaha you are now manually breathing 😈😈"
Person with Ondine's Curse:
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 ❤️
The main stickman must hate his life
Fr💀
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.
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 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
I love the fact that this comment section is slowly becoming a place for people with these disorders to talk about it. Wholesome!
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
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
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
Achievement Unlocked : Breath Manually
Debuff added*
WHY, WHY WOULD YOU DO THIS TO MEEEEE
*breathe
PetaQ!
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
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
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.
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.
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 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
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 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 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
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 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
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
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.
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
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 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.
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
progeria is absolutely fascinating to me: was a hyperfixation of mine before i even knew what hyperfixations were
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!
another thing about (morbius) moebius syndrome is that some people need special feeding tubes to eat
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
4:26 the true definition of
“I have no idea how to breathe” from ASDFMovie
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.
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
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!!!
I'd like to see the odds of 1 person having ever single one of these diseases simultaneously.
Great vid dude I hope you become bigger soon👌
we gettin severe health anxiety wit this one 🔥🔥🔥🔥🔥💯💯💯💯🗣️🗣️🗣️🗣️
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)
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:)))
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 💀
this is hitting youtube like cocaine hit low income households
Thank you for summarizing House MD in one video!
I really enjoy this video series. Keep up the good work ❤️
-Could you grab me a beer?
-Yeah I got you *zip*
You deserve WAY more subscribers
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.
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
I always think İ have all of these
Ör maybe no
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 thought this channel had 100k+ subs! It's so good and has a 1 million subscribers editing
Maybe one day!
I remember reading a crazy article a while ago about a guy who had auto brewery syndrome. How he got pulled over by the cops and they found alcohol in his system, he was shocked as he said he never drank ever and he would try to explain this to the cops. However they just took him as an asshole who was lying about drinking and driving, treating him badly. They would come to find out he had the syndrome
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
5:18 “this fishy smelling chemical accumulates in sweat, urine, reproductive fluids-“
Ooookay I think imma go outside for a lil bit.
Loved this! Thank you 😊
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 :)
gotta catch them all
You don’t want NF
💀
Instant death
Taking my MCAT this summer plz pray 4 me guys
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.
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..
*_you've again woke up the countryball community_*
I have been awakened
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
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.
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
Great vid this channel a hidden gem fr
Glad you think so!
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.
There’s Prader Willi syndrome where your brain tells you you’re hungry 24/7 even though your stomach is actually full, not only that but you burn calories slower leading to fast weight gain even if you consume 1200 or less calories
I have NF1 my self. I’m 22 currently, it’s thankfully be no so severe. Do have spots and freckling. Also a few soft growths. A lil learning problems. But for now that’s all I’m aware of.
I know NF2 doesn’t have a very long life expectancy and is also pretty painful.
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
"what makes me a good demoman?"
you should talk about dentinogenosis imperfecta!!
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
NF1 sufferer here and we definitely don't need surgery every year lol just yearly checkups
I think you should talk about Angelman’s syndrome. It’s just as rare as the rest of these but not mentioned.
That first one is Demoman from TF2
My friends older brother has cystic fribrosis, he's in his late twenties now as he has fortunately been able to access all medications and treatments available and was diagnosed very young. He's missing most of his lungs due to damage but he's going pretty good for his condition as a certain virus that effected peoples respiratory did not manage to knock him off : )
Just to let you know despite common belief Cf does not just effect your respiratory meaning some have lung problems while others have more issues with liver.