My name is Mark. In July 2008, when I was 41, I started to get some jaw line pain that went to my ear. I then started to get severe head pain. Treated as an ear infection, I finally got to the point of dehydration and such severe head pain that I couldn’t take it any longer.
My primary care physician (PCP) admitted me to the hospital. Whatever was wrong was not normal. I was in the local hospital for about 3 weeks, close to death. My body had turned all grayish, my eyes completely red from blood. Two months had gone by since I first developed symptoms. The doctor that was working my case thought that I had cancer. He got many other doctors involved to try to figure out what I had.
Finally, two of the doctors came into my hospital room and told me, “We think you have Wegener’s.” I replied, “WHAT? What is that?” I learned that Wegener’s Granulomatosis (WG) is a form of Vasculitis in the family of rare diseases. After being given steroids, I went from lying in the bed not being able to move without help, to sitting up. I went from feeling like I was dying, to having hope. I then was seen at Shands (a hospital system affiliated with the University of Florida), where I began more intense treatment.
Today, I’m on a maintenance dose of steroids and CellCept (a brand of mycophenolate). I’m thankful for the VF and its mission. The support is always great to have, and research and awareness are also very important to someday finding a cure.
Published: May 2012
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