By Merle on Sunday, June 04, 2000 - 12:41 pm:

My 17 year old daughter was diagnosed with ehler-danlos a few years ago. She now has developed raynauds symptoms (her hands are turning blue) intermittently.
Are these symptoms common together? Any suggestions of what to do, or a type of specialist to see?

By Sue C on Sunday, June 04, 2000 - 12:42 pm:

I would approach the people who made her diagnoses for EDS and her hand condition. Obviously they know something about each condition if they are willing to
diagnose. Ask them for advice and/or referrals to other doctors.

Search the internet and a hospital library for info about the hand condition. (www.ednf.org had much info & Linda is very helpful if you call)

Keep an open mind and keep questioning until you find satisfactory answers for yourself and your daughter. I've had some bad experiences with big university
hospital doctors, but I just hope they aren't the norm.

By Beverly on Sunday, June 04, 2000 - 12:42 pm:

She needs a rheumatologist that is versed in EDS.You can get auto-immune diseases along with EDS. I have fibromyalgia and EDS. Finding a knowledgeable
Rheumy can be a search, but its worth it. Try big university hospitals and call and ask if they have anyone who knows about EDS.

By Jen on Sunday, June 04, 2000 - 12:43 pm:

Raynaud phenomenon and acrocyanosis which is a bluish-purple discolouration of the hands and feet affect a significant number of people with EDS. To quote Dr
Peter Beighton "These episodes are probably due to an abnormality of the structure of the peripheral blood vessels". I know of a couple of people with this
condition along with their EDS.A geneticist is always a good option if your daughter hasn't already seen one.

By Sharon on Thursday, October 26, 2000 - 09:15 pm:

My Mother has Raynauds and there can be serious complications of it including dry gangrene she has just had a few fingers amputated because of this I have not had a diagnosis of EDs but EDS type III seems to cover a number of the problem that I get. My mother or anyone els in my family have not had a diagnosis either but Raynauds needs to be looked after by a Rheumatoligist at least to keep a check on it and you should try to limit any exposure of the affected area to cold by wearing gloves etc
Hope this helps (I don't mean to scare you but you are better informed so that you can get it before it becomes serious
Sharon