Question
I am 33 years old and I have loose joints in all of my main limbs.  About 2 years ago it started to affect my spine and it now hurts all the time.  When I bend over my spine just pops like crazy and it feels like it's on fire at all times.  My Question is what kind of experience with this have you seen and what kind of advice can you give me.  I have had a very hard time comming to grips with what I have because I have been an athlete all of my life and the past couple of years my life has taken a nose dive, even though I know I can't wish it away.  Thanks for your help if you can give me any.  Alan Michie

Answer
Hi Alan,

Have you been officially diagnosed with EDS?  If so, what type?  How long have you known?  Is your doctor knowledgable about EDS or not?  

I have Hypermobile type Ehlers Danlos Syndrome.  I'm 31.  I was a dancer for 16 years before my body started rebelling.  I was diagnosed with EDS at age 21 when my hip began sliding in and out.

I am currently editor of the EDS Today newsletter.  http://www.edstoday.org/  Please visit our website and click on "EDS Information" for more resources and articles on EDS.  Also check out http://www.ceda.ca and http://www.ednf.org for more information on EDS.

There are numerous support groups for EDS.  My best advice would be to join an online support group and ask questions.  While I am only one person with EDS, there are hundreds of people with EDS who participate in online support groups for EDS who can share their experiences with you.  EDS is unique because it doesn't effect everyone in the same way.  Within my own family, those with EDS all have different problems and severity.  That's why it helps to talk to many other people with EDS.  Some may be going through the same thing you are, others will not be.

I would be happy to talk with you more and send you information.  Please email me directly at [email protected].  If you send me your postal address, I will mail you a free trial issue of EDS Today.  I can also email you more detailed information about EDS.  

Sincerely,
Barbara Davis