Monthly Archives: August 2009

The Eyes Have (had) It

I got new glasses earlier this year, and an eye patch because of macular pucker issues. My eyesight is changing again so I’m going to try some bifocals. Computer text is especially hard on my eyes right now. Anyway, there’s a good PDF, “Your Eyes and Ehlers-Danlos Syndrome” at this website. It’s by an eye Dr who has Ehlers Danlos.

A local mention of Ehlers Danlos syndrome in a story from Clarksville (of “Last Train To…” fame). Congrats graduates.

Grand Rounds Blog Carnival – Vol 5.47 Invisible Illness

Invisible Chronic Illness Awareness Week is September 14-20. 2009.


43% Ehlers Danlos Syndrome patients in Europe report “Impossible access” to pain control medical services

35% Ehlers Danlos Syndrome patients in Europe report physicians refuse to treat them

Average wait time for pain control appointments for Ehlers Danlos Syndrome patients in Europe: 11 months

From this survey: The Voice of 12,000 Patients: Experiences & Expectations of Rare Disease Patients on Diagnosis & Care in Europe



My new trick

My new trick
Originally uploaded by jilly999

Attractive, huh?