Maybe I should start by saying what this site is not:
- It is not an official non-profit organization (although I’ll be happy to recommend some to you)
- It is not a source of indisputable irrefutable medical and scientific information (but I do have some cool links)
- It is not a charity or place for donations to be made (I can barely manage my own money – don’t give me yours!)
Now – with that out of the way, I can share some of my hopes for what this little blog site actually might be.
Most of all I hope it will be a place for people facing a diagnosis of Ehlers-Danlos Syndrome to find refuge; to realize that you’re not alone and that there ARE REAL RESOURCES available!!
Depending on the doctor who made your diagnosis, you may have been given very little hope for a “normal life” (whatever that is) or even for survival.
Pooey on them.
It seems I’m finding more and more that many doctors or medical professionals may technically know something about EDS, but – what they know is very outdated or at this point considered no longer accurate. Some of the stories I hear from newly diagnosed patients would be funny if they weren’t so terrifying.
In their defense, doctors have an endless number of “rare” diseases to keep track of and can’t possibly stay current on all of them. But, the good doctors are the ones who know this – and who don’t pretend otherwise. It’s so much better for a doctor to say they’re not certain about something than to rely entirely on information they knew a long time ago. Especially in fields where genetics play such a big role.
SO – if you’ve recently been given a harsh dose of pessimism from a well-intended but ill-informed medical practitioner, try to put it behind you now. Do your best to clear your mind and start fresh in your search for accurate, valid, and most of all CURRENT information. If I do this right, I’ll be able to offer some links and resources that can get you to the relevant information.