By Maggie Yeaman on Wednesday, November 28, 2001 - 03:38 pm:

Hi all,

Im new here. My rheumatologis thinks I have Ehlers Danlos syndrome. My hip subluxes. I walk with crutches. I am very hypermobile in most joints. My skin is sensitive.

I also have many Marfan features such as Rib cage deformity, Long fingers, toes and arm span. Long legs, underweight. Acaetabula dysplasia. I am however only 5" 4 inches tall. I have problems with my eyes. The right eye converges in if I look up or to the sides, this causes double vision. I am awaiting an appointment with a professor in Leeds. I have however been told that he has a YEARS waiting list !!! I also have high arched feet and hammer toes which have needed straightening twice.

Is there anyone out there like me ??
Maggie.

By az on Monday, December 30, 2002 - 02:02 am:

Not all Marfanoids have the typical features. So the height may not count. My friend was diagnosed with marfans by an eye specialist and since I have discovered a lot of optricians do know about Marfan features in the eyes. Maybe if you had your eyes checked by one who knows about Marfans he could pass his opinion onto your GP and get you a quicker appointment with the specialist in Leeds. I believe that to be Mr Bird, do not bother with any of his sidekicks as they are next to useless (Guess who diagnosed my HMS and told me to live with it? ) I have many similar symptoms to Marfans, but with HMS/Eds been so similar it is hard to distinguish between them and EDS has at least 10 types. Good luck with your appointment in Leeds
Az