Ehlers Danlos Syndrome

[Anonymous]

I think my 17 year old son has it. I haven't told him it has a name, but he always is calling me "fragile". He does wonder if he has joint problems, that he may be like me. I just tell him it's possible, but that guys tend to do better with loose joints because of their muscle mass, and that he should be regular and moderate about exercise. The weekend warrior kind of stuff is the worst for EDS.

[Anonymous]

Anonymous wrote:Link problem is probably the period that got added at the end of the sentence. Try one more time without the period.

And PS, curious for others here, if you have kids, are they affected? So nervous about my girl every time a joint seems to give in or she gets an unexplained ache. But she's still really young and don't want to "medicalize" anything this early. Terrified she'll be a 3rd generation wrecked by this, praying either it passes her by or early management will help forestall the worst later.

Thanks! And re: your question----I was dx'd as a toddler, and my dad was dx'd at the same time. He is much less effected than I am--he uses shoe insert orthodics and knee braces occasionally but doesn't have the same issues with chronic pain that I have. My brother has looser joints than average, but no other symptoms. Having a concrete diagnosis definitely helped--especially when I ended up in the ER with serious injuries from minor things like falling down on the carpet in our living room (those kind of injuries trigger child abuse screenings). The first time I tried running the quarter mile in first grade PE my knees ended up the size of softballs, so I self-modified PE all through school. I saw a physical therapist for a few years in elementary school to help build up the muscles around my weakest joints, which I think helped a lot. Having a reason why I had trouble doing things other kids did effortlessly was really helpful.