There is a world of difference between information about a condition that is text book and information that is written by someone with personal experience.
Sometimes you get lucky and you find a professional with personal experience.
I recently came across a great blog post on The Eye Doc Blog that talked about Dr Diana Discoll’s address on the ocular effects of Ehlers-Danlos Syndrome (EDS) at the Ehlers-Danlos National Foundation meeting in Houston last year.
Dr Discoll has Ehlers-Danlos and she was able to put together information that people with Ehlers-Danlos can print out and take with them to their eye doctor.
Follow this link to The Eye Doc Blog.
Hi everyone, and thank you for the kind reference to the blog. Ehlers-Danlos is terribly under-diagnosed, misdiagnosed, and misunderstood. It is certainly a journey! Networking through terrific blogs like this will improve our chances of getting the help we need, and guiding the researchers as to where our problems lie. My husband, who writes the eye-doc-blog, has been forced to become an expert at the ocular effects (he is surrounded by 3 of us at home!), so don’t hesitate to ask him anything related to your eyes.
Hang in, guys, you are not alone!
Fondly,
Dr. Diana Driscoll