Effect of Wegener's granulomatosis on work disability, need for medical care, and quality of life in patients younger than 40 years at diagnosis.

OBJECTIVES:

To evaluate the effects of Wegener's granulomatosis (WG) on employment status, work disability, and need for medical care of 60 consecutive WG patients aged < or = 40 years at diagnosis.

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What was found: About 39 percent of the WG sample were on disability, the rest either worked full-time or part-time. Those that worked had a higher frequency of hospital visits.

What I have to say: One year after I had the disease, I worked full-time for six months. My disease was not quiet then. I ended up on cytoxan again for another six months and my doctor was insistent that I didn't work in a regular work environment. The stress and germs from his viewpoint would shorten my life.

I do write and work at home. I have found from talking to other patients that the ones who work eventually have to retire early. I have also found talking to other patients who have WG is that disability is hard to get for us unless we use lawyers. I find that little fact mind-boggling. WG is a rare and can be fatal disease if not treated properly. Plus it is hard to diagnose. Just last year I know of two people who have died of the disease because they were not diagnosed early enough.