"Beyond Zebra"
Love. This. So. Much.
Thanks to a fellow EDS’er for posting it on one of the support groups, and for allowing it to be shared. Please help spread Ehlers Danlos Awareness!
Posts Tagged ‘Ehlers-Danlos’
Setting the Record Straight
The following is a link to various myths and facts about Ehlers-Danlos Syndrome.
http://www.ehlersdanlosnetwork.org/myths-facts.html
For the record, if anyone happened to catch the House episode recently about Ehlers Danlos, it was NOT an accurate depiction of the disease. One woman’s blog I follow, wrote about the episode, and I found that her feelings about it happened to echo my thoughts as well.
Spread the Knowledge, Keep the Faith
Great informational article about EDS and it’s manifestations. Gotta love the humor sprinkled throughout…
This is all I got…
I came across a couple of interesting blog posts by eye doctor, Diana Driscoll about EDS and POTS, and the possible MS connection. You can read them here. (It makes more sense to read the second one first and then scroll up to read the first one.)
POTS in Toledo
April 20th was finally the day I had been waiting for! Brad and I went to Toledo for my POTS appointment with Dr. Grubb’s nurse practitioner, Beverly. When I was diagnosed back in November, I researched, and researched, and researched POTS like it was my job. I would say that 90% of what I found about POTS was either written by Dr. Grubb (an electrophysiologist), was written by a team of doctors including Dr. Grubb and Beverly, or included quotes from Dr. Grubb.
When I went to see Dr. Tinkle in Cincinnati for EDS, Dr. Tinkle told me I needed to get in to see Dr. Grubb because he has such a strong understanding of not only, Dysautonomia, but also how POTS and EDS play into each other. However, I was warned that it takes quite some time to get into him because people all over the country travel to see him.