Pain Profile: Rob Saffer Living with Ehlers-Danlos Syndrome

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Rob Saffer runs two nonprofit organizations and lives in Woodstock, New York.

Pain Resource: What do you do for a living?
Rob Saffer: I work from home as the executive director of a nonprofit, the Creative Music Foundation, and I also founded another education and conservation nonprofit, the Overlook Mountain Center.

PR: What kind of pain do you have and how were you diagnosed?
RS: It’s actually, unfortunately, a lot of stories of misdiagnoses and specialists looking at their own specific thing and not the whole [person]. I was in my early 20s and had pretty serious lower back pain. I was seeing a chiropractor several times a week, though I was still athletic. Just before I turned 30, I was playing Ultimate Frisbee in the park and while running I felt something pop; it was probably a ruptured hamstring. I didn’t pay a lot of attention to it. I couldn’t run anywhere so I started swimming a lot. I was still able to play basketball and I was lifting weights at the Y in Brooklyn. Right around the age of 35, I realized I had a hard time putting on a jacket, a backpack, opening a door to a building; my shoulders were shot and felt really painful. I went to see a shoulder guy, an orthopedist. Before I even had my shirt off he said that he could see I had a lot of bone spurs, mostly in my left shoulder. He did a quick exam and told me that I had the shoulders of a 75-year-old former pro pitcher or quarterback. The ligaments were stretched out and everything was just banging around. He wanted to do surgery on both [shoulders].

I saw a bunch of surgeons, including a famous one, and they wanted to do surgery. I thought, something’s wrong here. I had a bad hamstring that prevented me from running, shoulders that were dislocating; it was a mess. Maybe when I was 30, I had an umbilical hernia; it was repaired pretty poorly and when I was 40 I had a double inguinal hernia that seemed sort of odd since I could do 300 or 400 sit-ups in a day.

Then I pretty much moved my life upstate [from New York City] and when my employer switched insurance I picked a random doctor and went for a physical. I was telling him about some of this history I was in pretty severe pain; I couldn’t walk a block without needing to stretch my hamstring, but I wasn’t really treating it with any medicine or anything. This doctor said, something’s not right here. He went to his office and he came back with a little printout of a Ehlers-Danlos syndrome, a genetic disorder. It’s a lack of collagen, which helps form connective tissue. I read the description and said, this sounds a lot like me. He said, I really think this is something you should look into. I found a support group and I found one [doctor] in New York City who’s in the genetics department at Weill Cornell Medical Center and she must have spent two hours with me a wonderful person.

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