Cindy,

I applaud you for trying to help educate the country on EDS and now
applaud you again for standing up to ABC and letting others know how
wrong they were! I am a mother of 6 and all of my children and I
have EDS type III. I am very lucky that we don't have the vascular
EDS and my heart breaks for families like you. So far we all just
have to live with the day to day aches and pains. I have one
daughter who has had spinal surgery for her severe scoliosis and
another daughter at age 10 diagnosed with Mitral valve prolapse.
When my son, who is now 17 was just a baby I think we were in the ER
at least 6 times with shoulders, elbows, or knees that continuously
popped out. You could imagine the looks and comments from the Drs
who wondered what we were doing to him! Well, enough of me and my
family, this is supposed to be about you and your son. Thank you
again for all you have done and I wish you and your son peace. Do
not be ashamed - It is ABC who should be!

linda


--- In ehlersdanlossupportclub@yahoogroups.com, "cindy clark" <c-
clark05@...> wrote:
>
> My email to the link that Lexie gave:
>
> Please understand Gary is not a "normal" EDSer. Yes he shows well
on TV. Sensationalism. But he is not who we are. Please understand
this disorder is about constant everyday non ending pain. Giving up
the life we thought we had and getting old inside several decades
before our time. It is a life of Grieving for what we thought we
would have. We can't work, we can't carry our children, we can't
have sex with our beloved partner. We live on pain pills that do
little and we just exist. Waiting for hope, for one Doctor to
understand and help us. Please don't show Gary as the one to
represent us. He is not us. He is so unlike all of us. You'll be
doing us an injustice to have him portray us. I cried tonight
reading his story. I'm ashamed I worked With you right now. I only
pray the show tomorrow shows our side of the story too. I did this
to help people with EDS not to hurt us further by people like Gary
that take us back decades.
> Cindy Clark
>
> [Non-text portions of this message have been removed]
>