Eds -

General
1

I've been reading about EDS and how it may affect the outcome of a decompression. So I have a few quick questions.

1. What type of Geneticist do you see to diagnosis it? Are there better docs to see than others?

2. I'm assuming blood tests are taken...do your parents have to also be tested? Is there a difference in

how it affects you if you are only a carrier of the trait or if you have it full-blown (not sure how to phrase this).

3. What exactly is done differently in a decompression, if you are found to have EDS?

4. I'm also assuming that there isn't a med to take to correct it...since it is a defect of genes...so I'm assuming that life-style changes are the only thing you can do to lessen it's effects in your life, depending on how much of it affects your life. Correct?

2

Excellent reading...Thank you, Abby for posting this!


3

Abby, I'm semi-newly dx'd with Chiari...this was a follow-up for me in connection with that dx. Family history points to EDS also. It is why I was asking about the EDS...because I do have my 1st specialist appt in Milwaukee with Dr. Heffez's group & I want to be thorough...they have all the specialists centrally located at their Chiari center. I have no clue beyond the fact that I will be spending all day, for two days there...and that my husband & I have a notebook started with questions pertaining to my past & current symptoms.