Coming Unglued

Profile: Although I do not have Ehlers-Danlos Syndrome myself, it has been an intimate part of my life for nearly 13 years starting with my husband who lost his battle in 1998, and now continues with my son. While it is officially classified as a "rare" disease, it is NOT rare to me. Two-thirds of my family were and are affected by it. In the years following my husband's death, I was blessed with another child - a daughter - a.k.a "my angel" - and am once again at the age of forty-something a happily married newly-wed. I live in a small community outside Atlanta, Georgia, but thanks to the internet have been able to find more than 100 friends going through very similar struggles. Without them I would have been clinically insane a long, long time ago - no joking - and of all the difficult things that come along with any form of Ehlers-Danlos, the ISOLATION is one of the worst. So, if you are reading this, you either have EDS, or you love someone who does. Welcome to our community; if nothing else is gained from visiting this blog, please know you are not alone!

Posts by Debbie Vaughan:

• Emily’s Hope: A Lesson for Us All
• Research at Johns’ Hopkins Offers Hope for EDS
• The Council of Mothers (and a few devoted dads)
• Letting Go . . . a little bit . .
• Survey Results: Vascular Type
• First Results from EDS Survey
• TAD Coalition – The Ritter Rules
• The Other Side of the Nightmare
• BIG BAD BULLY STRANGLES STUDENT Blames Teacher & Classmates
• Cardboard Walls