I have EDS (Ehlers Danlos Syndrome) Ask me anything...

[Baby8901]

...

[PookaboosMom]

What is it?

[Peytonsmommy310]

What is that exactly? :-)

[hellokittyy]

do you get sun burned easily ?

[lusyl95]

I have a friend whose 5 year old son suffers from it! He has hurt himself really bad from falling at school! Have you experienced any injuries due to your condition?

[Baby8901]

It's a disorder that affects your bones, joints, tissues, muscles and organs. I have Stage I, it's the most mild form but it's painful.

One of my eyes crosses in and I'm blind in that eye due to EDS, I have chronic migraines, "ciggarette paper" scars and stretch marks, heart problems (my heart rate gets to 160 resting at times), 3 miscarriages due to EDS, arthritis since I was little.

I can also sit in odd positions, like I can turn my leg so that my knee is facing the back of the room, the bottom of my foot faces the front of the room and my hip turns all the way around.

I also have scoliosis and many other health issues.

If you dont' stay active with EDS, you end up like my mom with COPD, fybromyalgia and other very painful things, but the problem is that we're only allowed to do yoga and swim. Due to how our joints turn, dislocate, etc, we're not allowed to run, walk long distances or lift weights.

 

Quoting PookaboosMom:

What is it?

 

[Baby8901]

Quite the opposite but only because I'm Cherokee. I have a hard time gettng sun burned (not complaining! lol) but my sister and mom do. I have a different dad than my sister so I'm naturally darker, she's blonde with really light skin.

Quoting hellokittyy:

do you get sun burned easily ?

[hellokittyy]

who in your family has it ?

Quoting Baby8901:

Quite the opposite but only because I'm Cherokee. I have a hard time gettng sun burned (not complaining! lol) but my sister and mom do. I have a different dad than my sister so I'm naturally darker, she's blonde with really light skin.

Quoting hellokittyy:

do you get sun burned easily ?

[Baby8901]

 

I just found out I have it, I found out in October. Looking back, though, yes. I've always been clumsy and had a difficult time, it always seemed like I was getting hurt one way or another. My problem is I have horrible ankles and knees due to it. I have to be really careful, I can't wear high heels, only wedges because I'll turn my ankles. One of my eyes crosses in and I have chronic migraines and an extremely fast heart rate and that causes problems. I'm really flexible and I ended up in the hospital a couple times from popping my joints out of socket and not being able to get them back in!

Quoting lusyl95:

I have a friend whose 5 year old son suffers from it! He has hurt himself really bad from falling at school! Have you experienced any injuries due to your condition?

[evensmummy]

My SIL has it as well. No questions, just ((hugs)). It doesn't seem to be a well known disease and I thank you for talking about it.

[Mamie_85]

My mom has that. Stage 2 I believe she said.