Ehlers-Danlos Syndrome Support Group

Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.

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Disability (social security)

I am at the point where although I am only 40, I cannot work on my feet non stop anymore. Has anyone with ED applied for SS disability and received an approval for it? If so, how long did it take, and did you use a lawyer or not?



I retired on disability from the Federal government at age 35 (5 years ago), so I went thru a different process since my first "evaluation" level came directly from my supervisor and his opinion on whether or not I could perform my job w/o the risk of being injured - and since my spine is very unstable, I was considered "a workman's comp claim waiting to happen," so they "encouraged" me to retire after coming to the conclusion based on my medical records that I can sustain spontaneous subluxations and injury due to chronic muscle spasms which pull my verterbrae out of alignment even sometimes when I'm sitting still - in fact, my Osteopath had it documented in his notes on me an incident when my spine dislocated during my sleep.

So, I was approved right away w/o needing a lawyer, and SS came through right away as well. (In my case, SS is applied for 6 months after the Federal retirement came through.)

I've heard that the lawfirm of Binder & Binder is particularly helpful - and even familiar w/EDS. And, I can't remember the other one, but it's one of those annoying daytime TV commercials - I think either "Sainz, Kirk & Miles" or "Chasen & Boscolo."

In late July 2008 at the bi-annual EDNF Conference to be held in Houston TX they will have a SS Administration representative onsite to hold private consultations with, and he/she will also be giving a presentation (or two) at the conference as well. She helped a TON of people at the 2006 conference (which was also in Houston at the same hotel). (The conference went so well there they decided to do it there again.)

Well wishes to you!

currently i am in the process, because i've been told that i wont be able to work, but here in Australia eds is not recognised as a disability and not alot of places or people know what eds is, so it takes longer then normal

I have EDS Vascular. I was diagnosed in Oct 2008. I had to stop working in April of 2008 because of it. I was only 31 at that time. I applied for SSD in Dec of 2008 and was denied. I had to hire a lawyer (well worth it). On Oct 30 of 2009 I was granted SSD. I highly recommend getting a lawyer--you do not need to deal with the stress. My lawyer did everything, all I had to was show up to the trial. Best of luck to you!
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