HI Cindy, Thanks for responding.

My main concern is for my daughter who is 7 months old. Do you have
children? If so, when were signs noticed? I have taken her to a
genetic counselor who stated a skin biopsy can be done on me to find
the gene and then she can be tested, otherwise, I'll have to wait
until she gets older. I recently had to take her to the hospital for
her elbow coming out of socket. It was very scary and I'm not sure
if this is a sign.

I went to a children's hospital as a young child and a teenager to
get me through my scoliosis and "growing pain" and I'm wondering now
if there is anything or any type of doctor that can help. I really
have a lot of pain in my knees and back but am not quite sure if it's
related. I just haven't been able to talk to anyone about this. All
my doctors, including when I was pregnant, and an orthopeodic doctor
near my home only know what they can look up in their medical book
and state they have never come across anyone with this disorder. I
did see a specialist when I was pregant for monitoring that was aware
but only in the pregnancy stage, not adulthood.

I may be having a lot of signs that I'm not attributing to the
disorder. My husband says I'm going to fall apart before I'm 30.
(not much time left :) He jokes about it, but I'm the one feeling
it. I've recently thought about seeking out a chiropractor and am
wondering if this is something that would help or not? Thanks for
listening. Anything you can tell me would be great. Would just feel
good to hear familiar symptoms and that someone else can relate.

Carla