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August 31, 2008


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It's something that the medical profession doesn't understand, I think, that those of us from families with dominant genetic differences grow up thinking we're normal. It wasn't until I was in my thirties that I started to understand that most people don't sit with their feet in their lap, and they certainly don't lie back and go to sleep with their feet in their lap. That other people didn't have some secret method for being able to stand in one place for more than five minutes without their knees buckling--that their secret was that they are built differently.

One Sick Mother


Yes. I was the same way. Had no idea normal people were so stiff.

That is why is it so important to learn and teach how to self-advocate. I was advocating for Grace automatically. They would say something stupid like "She has full range of motion" and I would say "How do you know? You don't know what her ROM is normally." The little fat guy got it instantly, but the older woman just looked annoyed.

That is the other thing: Some do get it when you explain, and some just never will.



Yes, that's it, they are stiff. If I had had a normal child, instead of the flopsy one I've got, I'd have been concerned and gone to the doctor to find out what was wrong!


Normalcy is weird and extremely subjective.. i always thought me and mom were just, clutzy. we'd both injure ourselves. and mom would have weird complications from her surgeries and we both didnt heal on the timelines the doctors thought we should..

then i found out about EDS and we got diagnosed..
and everything makes since now!

i didnt know when i was walking, that getting random sharp pains (likely subluxations of my feet bones) in my feet wernt normal. I told mom, and she got them too so i figured it was normal .. same w/ knee issues and random "twists" and sprains etc.. my hip problems, flexibility still only now discovering all sorts of things that most people don't experience.. that i dont think twice about cuz its been normal for me my whole life.
its still facinating in some ways.

hard to convince others (medical professionals...) sometimes though...i wanna spread the news about it moreso at my job and as i get thru nursing school and once im a nurse...increase awareness and knowledge.


This thread is a litle old, and I'm not familiar with htis board-- but I'll give it a try. My son, 19ys, has Asperger's and is doing quite well now that he's in college, so it's time, I guess for my 16yr old daughter to have problems-- and the doctor suspects ADS-- she had problems with her elbows popping out when she was little, now it's her hips and knees and yesterday her finger, for no reason-- We rushed her to the doctor just so he could see it looking all crooked and believe her-- and mentioned that she, her dad and her brother all have horrible stretch marks on their torsos. But none of them are particularly flexible (Though my son has always had trouble not falling over, or out of chairs, if he forgets to focus on his body-- we thought that was all sensory integration/aspie stuff--)
So are these two "Syndromes" at all related? I am feeling uncomfortable with two syndromes in the family.

One Sick Mother


I don't know if they are related necessarily, but I do know that quite a few people with EDS do have an ASD as well. However with ASDs at 1/150 right now, it makes sense that there would be some overlap with ASD and virtually everything.

This may sound harsh -and I don't mean it to; but if there are two syndromes in the family, they are there despite your comfort level. Denial will only delay help for your daughter and compound the problem.

some links for you: (has a messageboard with membership fee) (has a free messageboard)



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