Survey of Ehlers-Danlos Syndrome Patients

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Since my husband's death in 1998 from VEDS, there have been great strides made in the availability of information for patients and families coping with all types of EDS. With the explosion of social networking sites, I've managed to "meet" more people with EDS in the last 10 months than in the previous 11 YEARS.

What still seems to be lacking though, is some basic data on what we're all going through as patients and care-givers. By visiting many of the sites for Ehlers Danlos families, I've noticed some recurring themes with the questions and struggles we all face.

Even with all the great advances we're making in communicating with each other, there is still a lot we don't know about each other - about OURSELVES as a community of patients. It is for this reason, and this reason only, that I've created this INFORMAL survey; to help us get to know ourselves better. I believe that the better understanding we have of ourselves as a community - the better equipped we will be to advocate for ourselves and the family members we love.

We have so much to learn from each other! Should you choose to complete the survey, I assure you the information will be used carefully and with great discretion. I've not asked for names because I understand and respect how important maintaining privacy is for many of you. The questions are based on recurring questions that have come up in my various conversations with friends or as topics on different sites and discussion boards. I look forward to sharing the data with our community as soon as it is compiled.

Thank you so much for your time and participation!

Debbie Vaughan