Monthly Archives: March 2012

Ehlers Danlos & POTS NIH videos


Ehlers Danlos & POTS links 03-24-12

Sorry if there are any duplicates.

SSDI Approved

My social security disability was approved. I don’t know if it is because of the Ehlers Danlos or the Postural Orthostatic Tachycardia yet.

It was on the first try, without a lawyer. I applied last year but it was rejected administratively (missing paperwork in the mail). So I reapplied in September 2011.

I haven’t gotten the approval letter but my US Rep. was watching my application at my request & she had sent a letter a wk or 2 ago saying the local disability board recommended it be approved. I got a password from SS in the mail today so checked my online account & it has my monthly payment amount, so…

I made sure I had a copy of my medical records so I knew what was in them. I also traveled to see Dr Francomano for a 2nd opinion & had her records. I am a patient at Vandy’s autonomic clinic so their records were in there as well.

I included some journal articles since these are both rare and not on their list of conditions:

Quality of life in patients with postural tachycardia syndrome.
link [pdf]

Fatigue Is a Frequent and Clinically Relevant Problem in Ehlers-Danlos Syndrome


and the NIH info for my type of EDS

I applied online and faxed info to my local SS office. (After the missing mailed paperwork fiasco). I had extra copies of my medical records, which helped because the office had trouble getting some info for some reason so I just faxed it.