Ehlers-Danlos: Life on the sidelines

Insight into growing up undiagnosed

Category:

People & Blogs

Tags:

• activism
• beighton
• ednf
• eds
• ehlers
• danlos
• genetics
• hypermobility
• flexible

[eqsmooth]

I have type 3. No diagnosis until 21 but they knew something was terribly wrong at 3. They called it hypotonia in the 1960's because they had no biopsy test for it. I was always doing tricks for friends and family. In my 40's the pain is unreal and 24 hours. Osteo-arthritis has set in. I remember dislocating my shoulders all of the time and my hips. Smashing a volleyball? I know it sounds silly but it can be dangerous. Floating in water, swimming is really the only exercise that doesn't hurt.

[ufo8mykat]

Yup. We're lucky to know now that hypotonia is characteristic, so we can combat it as best we can.

[drooooopy]

I never could do some of the things mentioned here, like riding a bike, soccer etc (just never had the coordination/depth perception etc)

and I regularly worry, especially as I age, about being an accident waiting to happen here in my home when alone, etc, how many times have I nearly snapped my ankles, the times I've already tossed my leg muscles so they won't hold/heal and I can't even walk for weeks

but at the same time I have trained in a martial art before and I might again some day

[ufo8mykat]

It's very important to stay active, it would have been good for me to suggest that.

[ufo8mykat]

I'm sorry, I lost someone's comment into the depths of the internet! But they said I had it all wrong and should stay active.

They're absolutely right, but biking and forcing joints to do things that can push them beyond normal range or cause dislocations. We should definitely all stay active.  This was my first video about EDS, I was a mess then. I hope this gives insight into how it feels without condoning inaction. :)

[Marikay4]

I'm in tears watching this video. I'm EDS type 3. struggling through life on my own as I have really no suport(family thinks I'm faking my illness)and all the pain and everything is really hard to deal with sometimes. Do you live in Baltimore? I've been visiting the area more because I have friends there. its really lovely there.

[blondee84]

I find so much strength in your videos. This one totally describes what I'm trying to overcome right now.

My doctor said not to do anything where the risk outweighs the benefit: running, jumping, riding rollercoasters - pretty much anything physical but swimming. To see people who are able to do those things, especially when they don't realize what they have, brings on an array of emotions. You pretty much sum it up a lot of emotions in here.

[scottgandersonmd]

Don't take this video down. I'm following in your footsteps and it helps to know that you can be here, then move on.

[ufo8mykat]

You're so right, swimming is great. This was my first EDS post, so I was pretty unhappy at the time. Now I'm much more well adjusted. I consider taking this video down from time to time because it's just so darn sad, and that's not how life has to be. Thank you for your comment!

[JustsAngel]

idk i have it was born with it & never been able to be all that active fear of falling down & tearing my skin apart well joy is in whatever u find it believe it could be worse at least u have im sorry i just dont know i have always known i cant do alot & go from there

[cLundqvist]

I can empathize, I used to run and play basketball and was the all around athelete. Now I cant do those things. But i still write poetry and paint. I really feel for you.