While different. I was paralyzed a few years ago and getting used to being in a chair and everything that comes along with it is very difficult. But I’ve learned to love myself and embrace it.
It may be “different” but shocking and life altering, I can not imagine the strength needed to adjust to such a situation. You seem as if you have approached it with such courage I feel in awe, I recently had an injury which pales into insignificance compared with your experience but I really struggled with the change it meant to my life even though only in the sort term!
@@siege824s8 hello, I’m very sorry to hear that, have you lost sight in one eye or both? But the thing about learning to live with a life altering/debilitating injury is that things will always be different. They may not be the same, but they’re still there. There is still so much we are capable of and experiencing, for example you can still feel, touch, smell and love. It’s not easy, it’s not fair, but look at every day as a blessing that we’re still here. And may the future be more fortunate for us haha.
What about Vincent Chiaverelli? He was a famous Character actor with Marfan Syndrome, a rare genetic disorder that affects the connective tissues. It causes aneurysms, skeletal problems, eye problems, stretch marks without pregnancy. I also have this disorder, and almost died from it. It affects about one in 500,000 people. Jonathon Larson died of it the night before Rent moved to Broadway.
Or Michael Berryman, who starred in the original "The Hills Have Eyes" and also appeared in the movies "Weird Science" and "The Devils Rejects" and the Highway to Heaven episode "The Devil and Jonathan Smith" as well as the Motley Crue video "Smokin' in the Boys' Room". He has a rare condition called hypohidrotic ectotermal dysplasia, which basically means he doesn't have any pores, making him unable to grow hair, teeth or nails, or even sweat. This made it especially hard for him when they were filming the movie "The Hills Have Eyes", which was filmed in the desert in temperatures around 100 degrees.
I live with a spinal hemangionoma. There's no cure. No surgery. If it bursts I will pass away. I accept this and live everyday fully. I am more acutely aware I don't have the expected life expectancy average people have. This makes me more grateful for each day and experience.
I have one too but I was told I was probably born with it, and I’ve never been told that it could kill me at any moment? I think that’s a very rare outcome. Mine is in my lower spine though, is yours in your spine or spinal cord?
I live with a spinal hemangioma as well, C2 (high in my neck). There is very much surgery/cure for them if they are symptomatic (neurologic symptoms most commonly). Very few hemangioma's are in fact symptomatic however so they are nothing to worry about. They are just benign tumors that doctors usually keep an eye on. I am not sure who told you it could burst and kill you but ... find another doctor!
@@erickaklippert8983 Yeah I agree with you on this one. Get a second opinion. It is a very very rare complication that something will burst and kill you unless its an aneurism.
Being a Mother of a child born with a rare Genetic Syndrome, It's tough. I didn't know what my daughter's future -life span was gonna be. God has TRULY BLESSED her. She is 25 & a mother now. I have had to fight with the school's system here in Georgia because of her disabilities & them NOT following The NO Child left behind Act. I have spent my life at hospitals & doctors offices. God Bless these people & I pray for a happy, healthy & long life for them all.
Before I say the next thing. I lived in Georgia my whole life and know pretty much all the laws to do with school as I went through the public school system and worked as a translator for a family who's kid was having academic issues. He did not have any known syndromes or anything. Just learning difficulties. You need to look up the definition of No Child Left Behind Act. It has nothing to do with genetic disorders or disabilities. That is Americans with Disabilities act. NCLB Act is to ensure that all children are tested for Reading and Math at grades 3-8. It is to make sure no kid is left behind with regard to literacy and math levels. It has been long since over ridden by Common Core. Please do more reading into various things. There are other Acts out there that do protect your kid.
I agree. As a person who whole life revolve around music living with this has been very difficult for me. The morning I woke up and had lost all hearing in my right ear scared me so much. Luckily at the time it was temporary but the thought that one day I will probably lose it permanently is always in the back of my mind.
I’ve had Menieres for over 4 decades. I was a prisoner, lost in the desert for 34 years. Then went thru “burnout” and lost hearing in the affected ear….however, burnout has internalized the “head noise”. I have six sounds in the affected ear and two sounds in my good ear. Very, very difficult to live with. The medical books state that doctors should watch for “suicidal tendencies” in Menieres patients.
@@karensheline5183 I can definitely understand that. It’s so frustrating to be the only one that hears the high pitched screeching or loud roaring sounds that only get louder as the day goes on. I feel like I’m losing my mind constantly. I just want some peace from this.
Awww Danny Devito is such a sweetheart and loves babies. I actually met him at PDX airport in 1987ish. I was running away from an abusive relationship with a face so awful looking my own mom didn't recognize me and had my baby on my hip facing opposite me. While I was talking to the airport agent I felt my baby kicking and laughing, turned around to see a sweet man laughing, talking to and tickling my baby. He nearly fell over backwards when he saw my face or I probably would've been able to talk to him. I asked the agent as they escorted me to the plane if he thought that was actually Mr Devito and he replied "yes we get celebrities all the time!" Omg I was over the moon 🥰 wish I had the guts to actually talk to him... He seems to be a genuinely kind person!
People who have medical conditions or disabilities should embrace their uniqueness and don't let anyone or anything stop you from achieving your dreams even when the odds are stacked against you.
So many parents are so great with their children. They show their child that has obvious differences that that is just how it is. They are not special, just different. I have a very dear friend that did a marvelous job with her son. Dear Suzy, you are a Dynamo! Your son AJ is blessed to have you as his mom!
Well, it’s easier said than done. I have Multiple Sclerosis. When people come at me with all the things I cannot do, my brain shifts to see things as terrible as possible. I’ve started to be introverted, hidden in my room… it is not as easy as simply accepting.
I have synesthesia and I’m aspiring songwriter. I like to think of each key having a certain color associated it. For example, if I write a song in the key of G, I’m writing it in teal, cause that’s the color I associate that key with. I associate certain emotions with each key/color of music. It helps me get deeper with the feeling in my music rather than just the chord progression and lyrics do. I’ve always had a strong connection with music because of my condition. It doesn’t bother me to have synesthesia, I only see it as an advantage as a songwriter
Some of these conditions I’ve never heard of so I guess it’s good that you brought them up I realize that all of us have different things that we can do nothing about they try to live with it the best way we can and I’m glad to see there are some people that have done very well living with the problem and overcoming it was best they could
I have spastic hemiplegia cerebral palsy and ADHD. The interesting part about my condition is that the type of brain injury that caused me to develop cerebral palsy is so rare, yet it can be catastrophic depending upon how severe it is. I had a grade 4 intra-ventricular hemorrhage and hydrocephalus 2 weeks before I was born. My mom has told me that the chances that I would have developed the milder form of cerebral palsy that I have were very low, but it’s still amazing that I am able to do things even though I don’t have a lot of mobility in my left arm/hand and left leg. The type of brain injury that I had actually has a 60% mortality rate among babies born prematurely. I was born 7 weeks premature. Cerebral palsy is more common than what people might think, but most of the time, people tend to think about the more severe cases of cerebral palsy that affect other people, and not the milder forms like what I have. I was diagnosed with ADHD, anxiety, and persistent depressive disorder in my junior year of high school as well. When people give me pity for what I have experienced, I try to explain that there’s no need for pitying me as I am really happy that I don’t have my disabilities as severe as other people do. My mom also told me that I probably would of had more mental disabilities, had I not gotten the early intervention and diagnosis of my form of cerebral palsy that I have. I also hope that one day society will ultimately destroy all stigmas attached to people with disabilities alongside stereotypes as well. Society is very slow to accept the fact that people with all kinds of medical conditions are just as capable of doing things as people who don’t have medical conditions can.
I have CRPS ( it's nerve damage) all I feel is pain in my hands and arms.no one understands it because they can't see it. There is never a time when I'm not in pain. People who know my condition will ask how I'm doing, I will say fine even if my pain is up because People don't want to hear it all the time.
Relating to the first description, I see days of the weeks and numbers in colour. Some years ago, in recovery from anxiety and depression, I experienced panic attacks AND agoraphobia. I would not connect agoraphobia with narcissism - rather the reverse!
Finding out about Billie eilish makes me appreciate her music on a whole new level, keep up the good work girl period and Gigi Hadid is absolutely gorgeous screw the haters. I personally suffered from PTSD which I know isn't the most uncommon condition, the part of how it manifests in me is bouts of agoraphobia
I was so surprised that Stills came up on this list. My husband was recently diagnosed with Stills on top of this Rheumatoid Arthritis, and I had never heard of it before and have never heard it mentioned anywhere else. It is a rough disease and has some very confusing symptoms, my husband was in the hospital for nearly a week and had to have a whole bunch of other conditions ruled out before they were able to come to the diagnosis. He is finally on medication that seems to keep it under control, although he still has flare ups from time to time.
Hold up, since Gigi has Hashimoto's disease, why the hell is her mom, Yolanda, forcing her into so many diets to the point where she can't even enjoy her own birthday cake?
@@paulapinson7065 poor Gigi, having to grow up with that. Like I didn't like Yolanda before knowing about Gigi's condition because of the crazy diets and constant body shaming but now knowing about the condition, Yolanda is even more of a shitty mother than I once thought for putting her children through that. Shame on her.
After 37 I found out I have PMG, Polymicrogyria, it's in my brain! The folds in my brain weren't developed completely. I found out after I started feeling funny and having seizures. I'm now 47 and doing ok!
As I was trying to get into acting, I was 25 at the time, and constantly people would tell me they didnt know what to do with me because I’m 4 foot 8. and still looked 12. So they didn’t feel it was right to give me adult OR child roles. I told them I didn’t want child roles because I’m an adult. So they said I’d have to play teen roles. But even then, I was too short. It was very frustrating because constantly I was told my acting was great. But my look wasn’t. It was very discouraging. I ended up giving up. I had a growth hormonal issue as a kid that went untreated. So I was stuck the way I was. I’m now 29.
Marilu Henner once played a character who had the same condition as she has in real life, but was also in the early stages of Alzheimer’s. Now that would a strange combination
@@zimjun7 Not exclusively. I have Hashi's but fluctuate between over-active and under active. This isn't particularly uncommon. My weight fluctuates, even someone being in reverse to the expected, despite the results on thyroid pathology. I wouldn't say that symptoms are exclusive to either diagnosis as there is often cross over.
Proud Hashi's girl here! I have weight fluctuations, usually weight gains, bloating, fluctuating thyroid levels. But truthfully, whilst I've now learned to be proud of my condition, it is only because I now use it as means for awareness and education. Otherwise, it stinks! Fluctuating weight, bloating, brittle nails and hair, inability to control body temperature, difficulty swallowing, swollen glands, dry and itchy skin, bruising and bleeding after bumping into objects....... yeah, Hashi's is fun 😂😂😂
I have Ménière's disease too. It sucks. Ears constantly giving me issues. I’m partially deaf from it. I’m currently 23 and our ENT physician says I will likely need hearing aids when I get older.
I have Agoraphobia and believe me it's a terrible situation to be in, it has stopped me from doing a lot in my life, I had a panic attack in Walmart, and if my mom hadn't been there to talk me down I don't know what I would have done.
Same here.. I love hard rock so I took my son's to a huge Rock fest and was stressed out during but leaving was the worst panic attack ever. Horrible embarrassing hyperventilating, crying, shaking and utter life or death "gotta get the f outta here" yet 11,000 people trying to file thru a small open gate = hell for agoraphobics!!. I feel your frustrations.
@@Noctessa Sorry you went through that, it's a bad situation to be in, but at least you did leave your house and went with your son, and that took courage.
@@sherriv4860 Basically the same thing only you don't want to leave your house because you think your gonna freak out but what ever you do keep going places even if people make you nervous because it's really easy to get in the situation where you don't want to leave your house.
@@carriesullivan1786 Yep. Recently, I couldn't get out of my house to go grocery shopping. It was terrible. I felt depressed. I had to apologize to my bf. I don't think he understood.
some of those conditions aren't as rare as you think for example between 2%-10% of women have Endometriosis which is between 3.4 million and 17 million as there are roughly 170,000,000 women in the US
I was told that I have multiple sclerosis in 1997, and that I could end of blind or paralyzed, that has not happened. I have since been told that I have copd with a Mac lung infection, I also have had heart attacks and heart failure twice. My arteries keep clogging back up, I also have blockages in both carotid arteries! I am still going and won't give in or give up.
I have IBS and it’s really annoying expecally when people think I’m just avoiding things cus I don’t want to do it it’s like they don’t understand that it makes me use the bathroom all the time and makes me sick
It's harder than it seems to see a medical condition as uniqueness. Its great to accept it and learn to live with it but its not the uniqueness we want to be known for. We want to be known as the person we are, not defined by it...
Definitely agree. Society’s views on disabilities really need to change more. As someone who has cerebral palsy, ADHD, anxiety, and persistent depressive disorder, it bothers me that society is so slow to accept that people who have disabilities are just as much the same as people without disabilities and medical conditions.
I have smell/taste-visual synesthesia. Certain smells or tastes (they are closely related after all) create visual impressions. They are not visual in that they replace what my eyes actually see in front of me -- they are just impressions within the brain, "the mind's eye". Some smells are overrun by experience and knowledge, so if you ask me what I "see" when I smell skunk, I would tell you I "see" a skunk, without trying to delve any deeper into it. But if you ask me what I "see" when I smell or taste black pepper, I would tell you I see a vertical deep blue wall of something undulating and glistening like a wave rising and beginning to curl over me. When I smell a perfume that contains strong neroli, I picture this big, mangled orange-brown claw rotating toward me. Trippy. Users of LSD experience synesthesia-like sensory jumbling, and I sort of suspect that's why my mind feels calmness listening to psychedelic music. It amuses me how hard those performers seemed to try to capture their chemical mind excursions, in their band names, song titles, lyrics, outfits, performances. They seem like almost silly affectations sometimes. I've never taken drugs beyond pain relievers and cold/cough medications, so unless we can fault the extreme fever that came with having measles when I was an infant, I was just born this way.
I dont know if this really goes with this video exactly, but I want to share. I have this thing called trichotillomania or hair pulling disorder. It really affects my self estimate and stresses me out. But I just can't stop pulling my hair out. I'm learning to cope and I encourage people to learn a little bit about trichotillomania, because it's interesting and a good thing to learn a little bit about. Have a good rest of your day. :)
I have mild autism ( Asperger's) high anixity, schilolies, add, seizures but I don't have epilepsy, a bad right ankle, and a bad left knee. It can take a toll sometimes but it all inspired me to become a special education assistant teacher for elementary. I always wanted to be a teacher and having mental and physical illness helped me realize that special education is where I want to help the most!
Billie also has Tourette’s, but she learned how to control it. And from what I’ve seen, when she was on tour, she has an inhaler with her as well, and had to stop singing for a bit to take a few puffs of the inhaler
I totally get agoraphobia. My dad had it. I fight avoidant pd. It's complicated. Ppl need ppl. But being alone is best a lot of the time. Like I said, it's complicated.
I have Anxiety and Depression (possibly Autism). The two combined have given me a bad case of Agoraphobia. I work from home so I don't go out much and when I do to the store or something, I get severe headaches, dry mouth, and panic attacks.
I went to school with a girl that has brittle bone disease and she has been using a wheelchair as long as I've known her, but she did make sure she was strong enough to walk at her graduation so they wouldn't have to make any extra effort to get her chair on the stage.
I use to be a caregiver for a woman with a rare genetic disorder that only 800 people world wide Her body is turning into a living statue. Because her body produces so much calcium. Her muscles and tendons are being turned into a second skeletal system
Seeing musial tones or similar mixes I've thought of as sign of high crativity, not a disease. I do recall a 1970's interview that Jimi Hendrix gave mentioning this ability he had. Also, a bit off the topic, but along with Chaka-Kahn and many others, Hendrix was a partial native american.
I work with children and it is pretty common to associate colours and numbers with days of the week. Got to be honest it sounds a bit like she has ‘Main Character Syndrome’ instead lol
I often associate days of the week with colors for some reason. Like Monday is green, Tuesday is blue, Wednesday is purple, Thursday is orange, Friday is yellow, Saturday is white and Sunday is black. I don't know why that is. I don't actually see the colors, except in the back of my mind.
I was born with a condition called hydrocephalus, which is caused by an infection leading to blockages inside the brain; spinal fluid builds up pressure, affecting anything connected to the nervous system. In my case, I was paralyzed from one month of age, and didn't walk until I was 3 years old. In 2012 the condition recorded and I was rendered legally blind. I now have 30% normal vision. There is no cure for the condition, and it may eventually kill me, but I'm 56 now, and relatively healthy. The "normal pressure" variety of hydro caused the death of Tim Conway, in 2019,_at age 85.
My parting gift is a weakened heart causing difficulties breathing when I exert myself at all. (And the usual muscle and joint aches on AIs, but only two more years of those... I hope.)
I have Gastroparesis & Severe Pseudo Intestinal Obstruction Motility Disorder which has no cures & I live with them everyday on a liquid diet. I have an ileostomy to help out because my stomach is paralyzed as well as my colon. It's certainly a daily challenge as I also have 5 rare migraines, COPD, OA in both knees & hips with hip dysplasia. I need to have a hip replacement. I have benign tumours at the base of my spine that wrapped around my spinal cord & cause my back to ache. These are only some of the mountains I climb everyday. I'll be the 1st to tell you that my diseases don't define me, nor will they ever. Cheers ☮
Kate Mulgrew was born with teeth. I have scoliosis rare enough as a male, even more rare to require surgery. 67* curve morning of op. 2 titanium rods, 20 screws, fusion and some carved out rib from a hump. I survived the odds, adding in flat lines mid op, and in recovery. Daily pain @ a 7 ponders one if the 20 years they say they added were worth it.
I don't know if everybody has it. I don't. There are many forms of synesthesia: grapheme- color synesthesia, where people see numbers or letters as different colors; Chromesthesia, where people associate different sounds as colors, like a door opening, a car horn honking, or people talking; Spatial sequence syntesthesia, where people tend to see ordinal sequences as points in space- for example, they see months as a spiral or a column. People with this condition often have very good memories, usually better than people without the condition. There's also auditory- tactile synesthesia, where certain sounds can induce sensations in parts of the body- for example, they might hear a specific word or sound and it will feel like a touch on a specific part of the body, and Ordinal linguistic personification- in which ordered sequences, such as ordinal numbers, weekday names, months and alphabetical letters are associated with personalities or genders- for example- the number 2 might be a small boy with a short temper, or the letter g might be a busy mother with a kind face. There's also misophonia, where certain sounds can trigger negative experiences, like anger, disgust, hatred or fright. Mirror touch synesthesia, where a person might feel the same sensation that another person feels. Lexical gustatory synesthesia, where certain words or sounds have a distinct taste to them , like the word "basketball" might taste like waffles, and Kinesthetic synesthesia, which is the rarest form, ,is a combination of various different types of synesthesia.
I have an extremely rare Genetic disorder it is called Ehlers Danlos Syndrome, I'm not a celeb though. My dad and sister have it but not as bad as me. Joints constantly dislocate, stomach paralysis, vomiting, extreme dizziness(Dysautonomia), blood pooling, swelling, allergies to most stuff, hives, metabolizing medications too fast waking up in the middle surgery, numbing needles n local anesthetic, novacane, overheating etc. I also have Hashimoto's. I constantly dislocate my shoulders all night long as i try to sleep
Brittle bone disease is a form oh Ehlers Danlos Syndrome. There are 13 types and I have the more commonly diagnosed Hypermobile Ehlers Danlos Syndrome.
Would you kindly be able to send me any information that you have on these celebrities. My friend's baby has recently been diagnosed with Turner's Syndrome in utero and she's been told that the child likely won't survive beyond their first few years of life. I hope to show her that her child can live a successful and happy life.
I have the same type of Displasia as Danny De Vito. Other than knowing the main name, never knew there was 2nd term for it. Also didn't know that was the cause of me being short. No one in my family is really super tall (minus a few exceptions) so I just thought my height was hereditary. Going to look into this a lot more as I don't think I've ever even seen doctors for this. Just something my mom had mentioned I had.
I have a rare disease called Syringomyelia. After my diagnosis a few years ago, I found out one of my favorite country music singers, Rosanne Cash, has it also!
Urgh...Hashis is NOT rare. Its so common in fact that too many doctors misdiagnose it as depression, or stress or the reference range of the antibodies and hormone levels is to wide. There are many other celebs with more rare conditions.
My father had an even rarer form of myleo dysplasia, an inherited form. His mother had it too, and possibly her mother also. 30% of all patients with leukemia have myleo dysplasia leukemia. My great grandmother died from leukemia and my grandma & my dad both died from myleo dysplasia, although neither developed leukemia. Not everyone can get a bone marrow transplant, my father was an only child and by the time he was diagnosed, he was already in his late 70’s, not a good candidate for bone marrow transplant
I have the same thing Emily Gordon has. It's called cvid (common variable immunodeficiency). Only 4 in a million have it. It's a genetic mutation of the immune system where the body doesn't produce enough immunoglobulins to fight infections and other body invaders. It took me 29 yrs to get diagnosed. I wish she would be more public about it. When It comes to genetics, Drs are not so educated about the topic nor do they try to educate themselves. It's an extremely lonely disease.
Your title is "extremely rare" medical conditions. Hashimoto's is not rare at all. It apparently accounts for most of hypothyroidism cases. Millions are undiagnosed Hashimoto's.
