What is EDS?

Excellent video! I have hypermobile type Ehlers Danlos syndrome, although there are a dozen other distinct types of EDS and some related conditions like Marfan, Loeys-Dietz, and Stickler syndromes. I don't have much issues at all with dislocations, but instead meet that criteria by having chronic widespread pain. The dysautonomia/POTS has been the most debilitating aspect for me. I was improperly screened and dismissed in 1996, and wasn't properly diagnosed until 2013. The delayed diagnosis allowed my symptoms to get worse, and accelerated spinal and other degenerative issues.

So glad I found this video Dr. Chorley. You were the Dr who diagnosed me with this and seem to be the only one who understands this disease.

I just saw you and am glad that I did besides your vast knowledge, ability,bedside manner and as well your personality I made the correct/smart/choice to have you see me for primary and hEDS. Thank you for everything Doctor Chorley!!🇮🇪☘️🇺🇸

I have vEDS. I was adopted, and don't have any known family medical history so I went undiagnosed until my body finally fell apart. I always thought I was just flexible as a kid, I could rest my wrists on my toes while stretching. As I entered my 20s, I started having stomach issues. I developed a stomach hernia and slow digestion, frequently vomiting food many hours after eating. Then ALL of my pelvic organs prolapsed. In my 30s my shoulder started slipping out of the socket, my fingers started to dislocate frequently. My teeth started to loosen and break easily. I'm approaching 40 now and my neck is unstable, my ankles have become unstable, and I keep having extensor tendonitis in my wrists and feet. I tore a tendon in my foot last month just from standing on my toes to empty the washing machine. My veins in my hands and feet regularly rupture out of nowhere. I had a massive hemorrhage a few years ago that nearly killed me. That was when I was finally sent to a rheumatologist, and a geneticist. I have Vascular EDS and I can expect to have a "major event" by the time I'm 45. I'm scared. It's so much more than just being flexible. 😔💔

All the labeling has greater impact on mental health than the wide spread chronic pain. L didn't get diagnosed until age 44, now ten years later I am still in the process of getting all the comorbidities diagnoised, it is a full time job managing all that come with Ehlers-Danlos Syndrome. Grateful for providers like Dr.Chorley many doctors all but run when they hear Ehlers-Danlos, or are dismissive or completely ignorant about it

I have EDS I have so many medical problems from it gastroparesis, Atlantoaxial instability, POTS and extreme joint pain, immune deficiency, mal absorption and many more. EDS is horrible I can't even work. Many days I am bed bound.

My hEDS has been confirmed by specialists but my GP doesn't believe in EDS so she doesn't formalise the diagnosis. I've been tested for POTS but didn't have any issues with my heart during testing. My ankles are so instable I've twisted them many tines. Never dislocated anything though. I've fallen and hurt myself badly on many occasions. All doctors ask is if I was drinking (I don't). I'm fairly certain that we have this in our family, just that no one is diagnosed. It would explain so many health issues. To make matters worse, I also have endometriosis and ME/CFS. Make a guess why no one takes my EDS seriously. Not even when I bend my fingers beyond 90° or have places with very stretchy skin, or conplain about all the pain in my joints. My GP just gives me more antidepressants like that's the cure all.

That’s so awesome to see that there’s a good doctor and you know what EDS is, let’s me know that we can rely on at least one good person. Too bad you can’t teach all the other doctors about it. I have EDS, and I don’t think any of the doctors at our hospital knows what it is. I doubt my PCP would know what it is. Luckily my Neurologist knows it and so does my OB- GYN.

Appreciate what you do! Thank you.

Calling asap for an appointment with you! Thank you for sharing this information.

My uncle was one of the first Diagnosed patients in the UK with EDS He was born in the 1940's and suffered many health problems. Unfortunately he did not make it into his teen's

Someone who has EDs recently asked me if I have it too because she noticed I'm hypermobile. I always thought I'm just really flexible. My mom used to yell at me when I sat on the floor with my legs like a W because it's bad for your knees. What this person told me is it's a spectrum and can be different for everyone. She asked me about any other weird medical issues I might have. I have Renauds syndrome, extreme myopia and a sensitivity to acetominaphin. I've had knee pain at times, but I've also done a lot of sports that can lead to knee injury, so I've always blamed that.

Thanku for what you do

My mother has it and I was diagnosed with it at 7 years old, For a long time I was told not to do many physical things such as do not swim do not climb a ladder or do not carry anything heavier than a gallon of milk and I believed it but I was in pain constantly and I decided to take things into my own hands and start exercising and eating right and while I still live with pain every day it's a lot less than it was when I was actually following doctor's orders as you the younger kid

I remember walking out of my diagnosis smiling and crying cuz finally I wasn't crazy 😭😭😭😭

I wish your practice was somewhere I could get to. It's SO difficult to be taken seriously in Australia. Nobody listens.

I wont see anyone BUT. Him.. the puzzle. Is making sense now and I'm glad I moved to. Tulsa ok.

I really need to go back to Chorely. I am much sicker than I was last I saw him, and wheelchair bound now.

Excellent information. I am so grateful that there are some medical people who actually believe it exists and how debilitating and difficult it can be. Thank you for sharing this with us. Thank you for caring for 🦓 ZEBRAS GENETICS 🧬.

How can I get a stable Diagnosis for this, I've been getting surgeries for over 4 years now. And I'd just like to mitigate this pain.