Ehlers-Danlos Syndrome Online Support Group

Finally a confirmed diagnosis


After waiting for a year and a half, I finally was able to see a Geneticist last Friday. My autonomic specialist had already clinically diagnosed me with EDS, but we needed to see if any testing was warranted. Cross the t’s and dot the i’s kind of thing.

So it’s official, I have hEDS. The Geneticist spent two hours with me. It was so refreshing to hear someone who was connecting the dots between my dysautonomia and Ehlers-Danlos. We also did the pharmacogenic testing for analgesics. Surprisingly, I should be getting results by tomorrow~ish. I figured it would take six weeks or some long amount of time. My PCP was happy this morning when I saw him because now he has something that is concrete; not that the neurologist didn’t know what he was talking about, but this was straight from the horse’s mouth.

Is life different now? No…I’ve already adapted as much as possible and will continue to protect my joints and all the connective tissue as best I can. It is nice to have someone else that is 110% on your side and is backing you up.


Hey Firefly,
You say “Is life different now? No…” and I’m sorry, But I disagree. YOU HAVE A CONCRETE BONA FIDE DIAGNOSIS!!! Congratulations. And I truly mean that.
For many of us (me included) we have some dr’s who guess at a diagnosis or give a diagnosis by way of elimination ie 'If its not this and its not that, then it must be ***** ". The problem I found was that neither the guess nor elimination diagnosis were correct. But to actually receive a tested and confirmed diagnosis, that was such a relief for me. You’ve made adaptations and to a point I think we all do to manage the best way we can, we have to, to be able to live.
“It is nice to have someone else that is 110% on your side and is backing you up”. Personally I could not agree more and that has made a hell of a difference in my life, that is the one thing I can guarantee you of.

Merl from the Moderator Support Team