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

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