The EDS Online Survey

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 13 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.

By using the menu bar above, you can select the set of responses you wish to view.  You can choose from the full, combined set of responses, or select the page that has responses for a specific type of EDS.  Rather than try to write commentary on each chart or graph posted, my focus right now is to get the data together and online so that those of you who were gracious enough to participate can view the results for yourself.  This will definitely be a process as I go through and set this all up, and I truly appreciate your patience!


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