Saturday, May 01, 2010

Proving I have EDS

CinderBridge asked in a comment to my last post about the the techniques I use to prove I have EDS. Since EDS is a recognized physical disorder sometimes I'll get more respect if I can prove I have it.
This doesn't come up often. Most doctors don't know what EDS is or think it is no big deal. For me, it could explain the majority of my health problems or it could only explain my joint laxity and I could still have CFS/ME or something else.
I was diagnosed with EDS by a rheumatologist. Occasionally I'll report that dx to another doctor but they won't believe me. The most recent reason was 'You don't look like someone with EDS". Um, can someone tell me what someone with EDS looks like?
The first things I did was 'the thumb trick.' This is an aspect of the Beighton Scale that can be done sitting down. Engodo demonstrates the thumb trick and explains the Scale in a video on YouTube. When I was trying to 'prove' my EDS to my Opthamologist this didn't work because he wasn't familiar with the scale.

What did work was mashing my upper ear. I also learned about this from Engodo.

The last thing I did was to remind my doctor that my sclera are blue. I'm having trouble finding a simple link to prove this but this is a great handout for your eye care doctor that lists eye complications in EDS and includes blue sclera.
blog comments powered by Disqus