Combined Results (All types)

The charts and graphs on this page will feature results from the entire group of responses which as of February, 2011 is right at 671. For now . . . . think of these as snapshots of a much larger body of information. Some of you may know what a stickler I am about things being “accurate”, so it may take a little while to get everything posted. It is incredibly tempting to generate the charts and get them online as quickly as possible. But, if I’ve learned anything in the last 13 years it’s that misinformation will only hinder us as a community as we strive for more understanding among ourselves and the health care providers we rely so heavily upon. Hopefully I’ll have your patience as I sift through all the numbers for meaningful insight into the mystery of life with Ehlers-Danlos Syndrome.

I can’t stress enough that this survey is NOT scientific ~ the researchers and doctors at the major medical schools and hospitals around the world spend years compiling reliable controlled information that can be used to further new studies and clinical protocol. I would not dream of putting this information in the same class with true scientific research – I hope that anyone viewing these posts understands the difference as well.

The best way to think of this survey is perhaps as an online show-of-hands. With the advances in communication at our disposal now thanks to sites like Facebook and Twitter and You Tube, we find ourselves sort of in the same room together for the first time with other families and patients who know the struggles we face. We’re full of questions for each other; “Has this ever happened to you?” or “Am I the only one with this wierd symptom?” are themes that dominate the FB groups and internet boards alike. Which, in fact, is the whole basis for the creation of this survey; to see who else understands . . . to know that we’re not alone . . . to hopefully see our way ahead a little bit.