By Robin on Friday, June 21, 2002 - 10:12 am:

Hello
I am looking for help regarding stickler syndrome. My retinal specialist believes I have it. My primary doctor order some diagnostic testing but, I haven't gotten a solid diagnosis.
My primary is relocating to another state, how do I educate his replacement with the aproppriate information about the syndrome to get a solid diagnosis.
Even the head of radiology is unfamiliar with this syndrome. Can anyone help me?
I am basically quiet and shy, how do I get professionals to understand and accept that they need to be educated about this disorder?
Thank you.
Robin

By Robin Smith on Friday, June 21, 2002 - 10:16 am:

Any information will be greatly appreciated.

By linda on Saturday, June 22, 2002 - 09:15 am:

Robin! that is the magic question isn't it? since you don't want to insult those pompous docs. but u know what if a doc was not receptive enough to accept some useful info printed from the internet or in a brochure than u wouldn't want that person for A doc anyway. The key is finding someone willing to take the time. and you know what there are some out there. Regarding a diagnoses, it seems many people who so obviously have EDS don't get diagnosed so i would saY IF u believe u have it take all the precautions and treat yourself as if u had it. whether u r Diagnosed or not it makes no difference in treating the symptoms. It seems a DX only helps for emergency room or psychiatrist visits.