The eye group I went to was one that I went to from the time I was about two years old until I was about forty. I switched eye doctors because our insurance was paying a better rate for an Opthamologist than they were for an Optometrist. So, I went that route for a few years. But, I never found one I was very comfortable with, so, after a lot of thought, I decided to switch back to my original group. I believe I've said this before, but our whole family goes there and with the genetic issues popping up, I thought it would be best for all of us to be at the same place.
I went to the appointment armed with information about how EDS can present itself in the eyes. The eye doctor was very interested in the material and what I had to say about how EDS affected me; not just in my eyes, but in general. After we'd been talking for a bit, the eye Dr. got this look on her face, and all of a sudden she said that one of the women that worked for her might have EDS!! She called her in the room and had me look at her. Oh my! This women was easily a 9 out of 9 on the Beighton scale (a scale used to help diagnose EDS). She told the story of how she'd been to so many doctors and no one could diagnose her (sound familiar?). She was even tested for Marfan's Syndrome, which is actually similar to EDS. So, at least they were on the right track. I gave her the website address for the Ehlers Danlos National Foundation (www ednf.org) and I told her about my Geneticist. I so hope that she is able to get the help that she so desperately needs.
I still cannot get over how everything played out. The fact that I went to that particular doctor, that the women with EDS was working that day, and, most importantly, that the eye doctor noticed that she had someone working for her that might have this disorder!! I feel as if I really did help someone that day (maybe more than one person as the eye doctor said she had a few other patients who might have it too!). If there really is a God (which I believe that there is), surely he had a part in our meeting! I go back next week to pick up my new glasses, so hopefully, I'll find out if she knows anything more.
Well, it's only one week until the EDNF annual conference!!! Woo Hoo!! I'm so excited!!! Tim and I are going shopping this weekend so I can get a few new outfits for the occasion (that's a good reason to shop, isn't it?). I'm so eager to learn as much as I can about EDS. And, to meet others with the disease. I also hope Tim can get a better understanding of the illness too. Those of you who follow me on twitter can watch for my tweets from the conference. I don't tweet very often, but I feel this would be a good use of the medium. Now, I may end up not being able to tweet much because I've never actually been to a conference and I may not have the time (or energy to do so), but I will do my best.
Until next time...be well!
"Every day do something that will inch you closer to a better tomorrow."~Doug Firebaugh