2017 EDS Classification - Your Questions Answered

[oliverlikescats]

I have been considering that I have hEDS, and now with this new, stricter criteria I'm very sure that I have it. I'm thankful for this new criteria because I feel much more equipped to advocate for myself and to defend myself in doctor's spaces.

[elisesrn]

What can we as patients do to increase genetic testing? Are there clinical trials being done? Its clear we need large numbers in the genetic data base to identify yet unidentified genes etc. Insurance won't cover testing unless the gene is known as pathological. Thanks to your efforts, we have engaged and informed patient support groups and are a large untapped resource. I'm sure many of us would be willing to contribute to clinical trials or any testing. How can we best help?

[amberstarrfaw]

I’m a member of Inspire and a fellow zebra and so glad you made this so it gives me a visual explanation!! Thank you!!! Eds3

[elisesrn]

Thank you as always. What is the best way to disseminate information to health care providers? A print out for providers would be wonderful. Could you include verbiage stating who can/should diagnose? People are still finding great difficulty getting diagnosis on paper. Rheum saying only geneticist can do it etc.

[shannongreenwell]

My Neurologist is the one who tested me and diagnosed me with EDS, I have the Classical type.

[daniellescarpitto]

Thank you for all your hard work and effort! This zebra is rooting for you guys as you move forward!! *cheering*

[urbanhawk]

Hi I went to see my cardiologist this week for a follow up for my POTS. I also got my results from an ultrasound I had last year on my heart and found out my aortic root is in the high normal. Tbh I don't understand what this means and could it become abnormal with my EDS. I should of asked him while there but was just to focused on getting my POTS under control I didn't. And now I got my review letter and read it, it's made me curious

[andreawisner]

Which country does the best diagnosis and treatment of EDS?

[ryderlisa]

i read that this was going to be posted as a downloadable pdf but i cant find it

[Tinaism]

If any females are reading. Have any of you had a tack up of the bladder and did it work? TY

[vrediana]

What about type 6a? It's always neglected and people die of it :((

[dunias.]

In the criteria 2, feature A, I've only 2 manifestations, so what about me ? I've the criteria 1, 2-only the feature C, and criteria 3 I have it also. So Ive finally h-EDS??? please I need a good reponse and diagnostic