Ankylose This! Living with Ankylosing Spondylitis

Monday, November 30, 2009

Ankylosing spondylitis and work

The National Ankylosing Spondylitis Society conducted a survey of 324 of their members in August and September 2009. More than half of the respondents (54 percent) with severe AS identified their workplace as the part of their lives most affected by their disease. About a third (38 percent) said that they'd received advice on coping with work from either a health care professional or their employer, and around half said that their doctor had never discussed work issues with them. Press release.

I'm both nodding in recognition and disturbed by these results. I could say quite a bit about how AS has affected my own career prospects and my ability to work full or even part time. I was under the impression that much of the treatment we undergo was aimed in large part at getting us to stay in or return to the workplace (or, to put it another way: without treatment we would be unable to work). Does it say something about the quality and effectiveness of our treatment if so many of us are reporting work issues? If nothing else, managing workplace issues may be a missing link in the total care package.

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Friday, August 21, 2009

Man with Ankylosing Spondylitis on Bill Moyers' Journal

This evening's episode of Bill Moyer's Journal featured several Americans struggling with serious health conditions for which they couldn't get adequate treatment because they lacked health insurance. One of them, Carlos Benitez, had been struggling for years with back pain that he was trying to treat with over the counter pain meds. The medications were causing bleeding into the stomach, and his blood loss was so great that he had to be hospitalized and transfused. He was hunched over, had limited neck mobility and had lost seven inches in height. Of course, the minute I saw him, I recognized that he had ankylosing spondylitis, and the diagnosis was confirmed by the doctors that he was able to see as a result of his participation in the documentary.

What surprised me was that the doctors immediately started talking about surgery. he could still drive, and he had some neck mobility. After exploring surgery options in Mexico, he was able to get spinal surgery for free as a result of the documentary. The physicians were able to restore four inches of his height, and he was pain-free several months later.

The structure of the documentary didn't allow them to go into a lot of detail about life with AS. I worry that it left the impression that surgery is a cure. But it was interesting to finally see someone talking about AS on national TV.

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