2 of my boys have been DX'd with EDS

September 22, 2007

My 13 year old and 8 year old sons were diagnosed with Classical

Type Ehlers-Danlos Syndrome last week by Dr.Clair Francomano. She

diagnosed me with EDS in June and wanted me to bring them in to be

tested. I also have a 2 year old son that she does not want to test

for a few more years. I have joined over at the Ehlers-Danlos

National Fondation site, and I have posted on the message board over

there, but I am not meeting other parents that have been diagnosed

with Chiari, TCS, EDS, and all of the problems I have and have

children diagnosed with EDS as well. I am so worried about my boys

and what this means for their futures. Dr. Francomano, did explain

to me that boys seem to be less symptomatic then females, and that

just because they have been dx'd with EDS that does not mean they

will end up with the other conditions I have been diagnosed with. My

8 year old son scored 9/9 on the beighton scale, some of the things

he did for the doctor that day I had no idea he could do. My 13 year

old is able to dislocate his shoulders on his own so she is having

him start PT to streghten the muscle in his shoulders and I am

trying to get him to stop doing this. To him it is a cool trick and

he says it does not hurt him. She also suspects slight scoliosis in

my 13 year old, so he is going for x-rays of his spine. I feel like

I have enough to worry about with my health problems. I keep

thinking over in my mind why is this happening to my boys? I am on

the internet learning all I can at all hours of the day and night, I

want to learn what I can do to prevent some of the problems they

could have later in life, but I don't want to shelter them from

everything they love trying to do so. They are very active boys. My

8 year old cried the night he was dx'd with EDS because he says his

dream of becoming a pro football player will never come true. It

just breaks my heart.It was so much easier getting the DX for myself.

Laurie

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