Awesome job on explaining EDS! Keep up the great work! I have Classical EDS and not many physicians have an inkling of a clue what it is! Which means going to hospital for a EDS patient is very difficult and scary! Luckily my Neurologist’s office is very familiar with EDS and POTS, which I have. I have GERD AND PCOS. Along with Migraines and CCI( I sleep with a CCollar on at night). I could do these things as a child and young adult and a teenager, but due to a fatal car accident that killed my mother and mangled me I am unable to do much of anything at the moment. I am still very hyper mobile however! Especially in my arms and knees and the tops of my feet’s. .
There are no doctors with availability around me 4 plus hours out. my mom is diagnosed. i have all the symptoms. yet no doctor will diagnose me, and im in limbo and im in so much pain everyday. i had a big surgery 2 years ago and my life flipped and i havent been the same.
Same with me. I live in Ontario and apparently the only ones that can diagnose are the doctor of the Ehlers-Danlos Clinic i Toronto, with a wait list of 2.5 years.
I live in Texas and just got diagnosed after searching the state for 5+ years for a doctor who could help me. Even though it's not a rheumatological condition, my local rheumatologist is familiar with it because his son has it, so he's treating me now. But I totally understand. It's been hell.
My primary doctor referred me to a geneticist who sent me the genetic testing kit from invitae in the mail. Everything was Teledoc / phone conversations aside from the cheek swab at home.
I'm 66, my daughter was diagnosed a few years ago. I had health issues my whole life. I used to bend my thumb to freak out friends when I was a kid. A doc kept me out of gym from 7th thru graduation! That never happens. I had major knee surgery at 19. Right now, I need bilateral reverse shoulder replacement, knee replacement and my spinevis bad. My joints are full of arthritis, spurs, blown clavicles and one rotator cuff is almost gone. I hemmoraged after delivering 3 kids. Had to have a hysterectomy at 38!! Prolapsed bladder and uterus. I finally found a specialist an hour away. I'm so anxious to speak to him.
@@DMAC1301 A lot of doctors don't know about it. I've been asking around. I had to find a genetecist over an hour away. I DO have hypermobile Ehlers Danlose. Nice to finally have an answer.
This is me. To think all of these years I’ve been telling my drs and nobody I mean not one put these together. It’s always the going joke, how at my age I can bend the way I do.
My mom was diagnosed with ED probably about 15 years ago multiple surgeries even before that and after and unfortunately, she suffered a massive brain aneurysm, which I guess is part of the vascular system which could’ve been infected by the ED. I’m not sure it’s all too new right now, but my brother and I now have to get screened for potential aneurysms as my mother had three in her brain. It only took one to kill her devastating loss. Miss her forever.
My girlfriend is struggling with EDS life, she can't sleep 4 hrs on average a night, can't eat. Doctors in Michigan have no clue. She also is dealing with MCAS
@19HuskyWolf70 Sleep is crucial to health. There is a discipline about good sleep hygiene. No screen after 10 pm. In the bedroom: no light, no sound, no companion. I take 2 Tylenol PM at 8, and sometimes, even that is not enough.
I was diagnosed with EDS recently. It impacts my entire body. Does anyone have severe tummy problems from it? I am looking for another doctor bc they think I have something else (POTS)
I have terrible stomach issues. Pain. It feels as though I can feel my food moving through my intestines and it’s just pain. Makes it hard to eat at all. I have no idea how to deal with it.
I have POTS, fibro and now possibly this EDS' thing- before all the watchamatchacallit diagnosis- my tummy has suffered the horrors™ since i was born into this wasteland. A lot of puke and sh❤t in my life until I ended up malnourished in 2019 and in 2020 when i almost threw up my gut out of my useless body the doctors took me seriously- and treated me accordingly- After 2 and a half years of eating tasteless stuff now i'm okay and not actively dying (fat and happy or so they say). They told me at that time i had irritable bowel syndrome but now i know it was related to the illness i've mentioned at the start of this rant, it sucks! It really does! I can't remember how cheese or french fries taste like but i can eat Oreos and drink vegan strawberry milk to my ❤'s content so it's okay . Now i'm fully experiencing chronic pain, fainting at least twice a week but without sh❤tting myself to death so it is an improvement! 🎉🎉🎉
I'm so very sorry. She sounds like my ex. He hated me for being sick all the time. I didn't know it was EDS until my daughter was diagnosed a few years back. I almost died from sepsis and he never visited!! Your wife and my ex should go on a date. Lol ❤❤
And they will both reap what they sowed. In sickness and in health is what they vowed and broke it. Its very sad. I hope and pray that you both get the help and support you deserve.
So deeply sorry, yet perhaps when one door closes.... another opens. Not to bypass the hurt or feelings of abandonment. There's so much that folx can do once aware and educated on how to better help ourselves and support others. Know you're not at all alone in this. There was an article in LA Times a couple years back stating - not a 'rare' condition. Just had been reported as so because not taught at medical schools literally for decades since NIH knew about it as far back as 1970. Can't diagnose what hasn't been demonstrated. Lots of videos, people reporting on line. Wishing you a chance to begin a new with reciprocal support for yourself and others. 💖
People diagnosed with EDS... how did you get the diagnosis? What were you going through? What kind of symptoms? Because I can make my thumb touch my forearm, but, it's that a key symptom of ehlers danlos? I also have a mitral valve prolapse. So do I have it?
The genetic component of hypermobile EDS is unknown, thus your characterization of hEDS as autosomal dominant should be removed. It's a very common misconception of hEDS.
Soo a clip from greys anatomy had me saying oh that happens to me. Then a comment mentioned the dx so I thought I’d look it up. Now I’m 😅 because I answered yes to 4 out of 5 with a possible. Am I tripping? I always have joint laxity and a few other symptoms. I’m shook right now.
Awesome job on explaining EDS! Keep up the great work! I have Classical EDS and not many physicians have an inkling of a clue what it is! Which means going to hospital for a EDS patient is very difficult and scary! Luckily my Neurologist’s office is very familiar with EDS and POTS, which I have. I have GERD AND PCOS. Along with Migraines and CCI( I sleep with a CCollar on at night). I could do these things as a child and young adult and a teenager, but due to a fatal car accident that killed my mother and mangled me I am unable to do much of anything at the moment. I am still very hyper mobile however! Especially in my arms and knees and the tops of my feet’s. .
I was in the hospital last weekend. My neck was shooting pain into my head that was unbearable. Not one person heard of EDS.
There are no doctors with availability around me 4 plus hours out. my mom is diagnosed. i have all the symptoms. yet no doctor will diagnose me, and im in limbo and im in so much pain everyday. i had a big surgery 2 years ago and my life flipped and i havent been the same.
Its so difficult. I finally found a doctor who will see me and my appointment was scheduled 8 months out 🙃
I asked my GP about EDS as myself, my daughter and son have symptoms. She asked "what's that?" So I'm pretty much screwed if this is what we have
Same with me. I live in Ontario and apparently the only ones that can diagnose are the doctor of the Ehlers-Danlos Clinic i Toronto, with a wait list of 2.5 years.
I live in Texas and just got diagnosed after searching the state for 5+ years for a doctor who could help me. Even though it's not a rheumatological condition, my local rheumatologist is familiar with it because his son has it, so he's treating me now. But I totally understand. It's been hell.
My primary doctor referred me to a geneticist who sent me the genetic testing kit from invitae in the mail. Everything was Teledoc / phone conversations aside from the cheek swab at home.
I also LOVE that you called it a "poly pocket" - I live in England now and no one uses that phrase here except me.
I'm 66, my daughter was diagnosed a few years ago. I had health issues my whole life. I used to bend my thumb to freak out friends when I was a kid. A doc kept me out of gym from 7th thru graduation! That never happens. I had major knee surgery at 19. Right now, I need bilateral reverse shoulder replacement, knee replacement and my spinevis bad. My joints are full of arthritis, spurs, blown clavicles and one rotator cuff is almost gone. I hemmoraged after delivering 3 kids. Had to have a hysterectomy at 38!! Prolapsed bladder and uterus. I finally found a specialist an hour away. I'm so anxious to speak to him.
This sounds like my life. Why has no dr ever checked for this. Sometimes I’m treated like I’m a crazy person.
@@DMAC1301 A lot of doctors don't know about it. I've been asking around. I had to find a genetecist over an hour away. I DO have hypermobile Ehlers Danlose. Nice to finally have an answer.
Excellent presentation re Ehlers Danlos
Thank you!
This is me. To think all of these years I’ve been telling my drs and nobody I mean not one put these together. It’s always the going joke, how at my age I can bend the way I do.
Yes! I felt proud of it😅
Never heard about this syndrome until today. I’m buying a hoodie from the Ehlers Danlos website so I can wear it and spread awareness.
Nicely explained
Thanks 🙂
My mom was diagnosed with ED probably about 15 years ago multiple surgeries even before that and after and unfortunately, she suffered a massive brain aneurysm, which I guess is part of the vascular system which could’ve been infected by the ED. I’m not sure it’s all too new right now, but my brother and I now have to get screened for potential aneurysms as my mother had three in her brain. It only took one to kill her devastating loss. Miss her forever.
My girlfriend is struggling with EDS life, she can't sleep 4 hrs on average a night, can't eat.
Doctors in Michigan have no clue. She also is dealing with MCAS
Two Tylenol PM for me every night near 8 PM and sometimes I still need more help. Black out shades, drapes, and no electronic lights at all help.
How on earth to cure this????? Tell me ?
@19HuskyWolf70 Sleep is crucial to health. There is a discipline about good sleep hygiene. No screen after 10 pm. In the bedroom: no light, no sound, no companion. I take 2 Tylenol PM at 8, and sometimes, even that is not enough.
@@teodorstefanov984 Unfortunately there is no cure. Focus is on management. God bless.
@@dvf4550 what includes management?
Thank you 😊
You're welcome 😊
I was diagnosed with EDS recently. It impacts my entire body. Does anyone have severe tummy problems from it? I am looking for another doctor bc they think I have something else (POTS)
I have GERD due to my EDS and I have POTS, too. I have cEDS.
I have irritable bowl syndrome and a prolapsed pelvic floor
U most likely have gastroparesis. Most of us with EDS do.
I have terrible stomach issues. Pain. It feels as though I can feel my food moving through my intestines and it’s just pain. Makes it hard to eat at all. I have no idea how to deal with it.
I have POTS, fibro and now possibly this EDS' thing- before all the watchamatchacallit diagnosis- my tummy has suffered the horrors™ since i was born into this wasteland. A lot of puke and sh❤t in my life until I ended up malnourished in 2019 and in 2020 when i almost threw up my gut out of my useless body the doctors took me seriously- and treated me accordingly- After 2 and a half years of eating tasteless stuff now i'm okay and not actively dying (fat and happy or so they say). They told me at that time i had irritable bowel syndrome but now i know it was related to the illness i've mentioned at the start of this rant, it sucks! It really does! I can't remember how cheese or french fries taste like but i can eat Oreos and drink vegan strawberry milk to my ❤'s content so it's okay . Now i'm fully experiencing chronic pain, fainting at least twice a week but without sh❤tting myself to death so it is an improvement! 🎉🎉🎉
I have muscle spasms throughout my body from it. Doctor prescribed a med often also used for Parkinson's so i can sleep at night.
My wife applied for divorce after she got to know that's no cure for me and she left me suffering by myself in New York hospitals cuz I have EDS
I'm so very sorry. She sounds like my ex. He hated me for being sick all the time. I didn't know it was EDS until my daughter was diagnosed a few years back. I almost died from sepsis and he never visited!! Your wife and my ex should go on a date. Lol ❤❤
And they will both reap what they sowed. In sickness and in health is what they vowed and broke it. Its very sad. I hope and pray that you both get the help and support you deserve.
I went through a deep depression last year, and my woman left me. I'm very sorry about your condition. What happens next? Do you just wait it out?
So deeply sorry, yet perhaps when one door closes.... another opens. Not to bypass the hurt or feelings of abandonment. There's so much that folx can do once aware and educated on how to better help ourselves and support others. Know you're not at all alone in this. There was an article in LA Times a couple years back stating - not a 'rare' condition. Just had been reported as so because not taught at medical schools literally for decades since NIH knew about it as far back as 1970. Can't diagnose what hasn't been demonstrated. Lots of videos, people reporting on line. Wishing you a chance to begin a new with reciprocal support for yourself and others. 💖
@@selfovercome4161
Nothing much, I couldn't stay in NY and I left the country to Switzerland for better care .
I don’t have stretchy skin but like everything else. My doctors don’t want to test me because I don’t have stretchy skin
Took them from the age of 9 and I’m now 24 to find out I have elder Danols syndrome I don’t know whether I should be pissed or relieved to find out
52 only dx this year 😢
My daughter has been struggling with EDS for the past 4 or 5 years. Every day she is in pain. It is a terrible disease.
Plus Cranial Istability, and Occult Tethered Cord..
People diagnosed with EDS... how did you get the diagnosis? What were you going through? What kind of symptoms? Because I can make my thumb touch my forearm, but, it's that a key symptom of ehlers danlos? I also have a mitral valve prolapse. So do I have it?
The genetic component of hypermobile EDS is unknown, thus your characterization of hEDS as autosomal dominant should be removed. It's a very common misconception of hEDS.
What kind of doctor will diagnose this?
Soo a clip from greys anatomy had me saying oh that happens to me. Then a comment mentioned the dx so I thought I’d look it up. Now I’m 😅 because I answered yes to 4 out of 5 with a possible. Am I tripping? I always have joint laxity and a few other symptoms. I’m shook right now.
Sorry, what does soo mean?
*The syndrome that makes you the pirate king.*
hahahahahahahahah the sun god
Jones Anthony Wilson Sharon Hernandez Jason