Survivor Has GVHD on the Run

By Becky Harasimowicz

In 1998 I had an allogeneic BMT for myelodysplastic syndrome. The transplant went extremely well, and I had no major complications.

However, four months later I developed chronic GVHD. My skin was ridiculously itchy, and I got little heat blisters if I got too hot or was in the sun. My liver enzyme counts skyrocketed. I was put on steroids (on April 1—happy April Fool’s Day!) and remained on them for several months.

During that time, I was training to walk in the Walt Disney World Marathon as part of the Leukemia and Lymphoma Society’s Team-In-Training. The training was uncomfortable since I had put on weight (due to the steroids), got heat blisters and itched when I got hot, and had sore knees and hips. I also had trouble sweating. At the time, what I was going through seemed horrible, but looking back, I realize how fortunate I was not to have had a worse case of chronic GVHD.

I am now off all steroids and immunosuppressive drugs. I still have some mild, lingering GVHD (occasional mild itching, skin rash and slightly elevated liver enzymes), but as long as the symptoms don’t get worse we will try to let my body burn out the GVHD.

I am training for my second Disney marathon and will be running—not walking—this time. My knees and hips still bother me, but I’m taking Osteo-Biflex® and that seems to help.

I believe that the walking, running and exercise in general played a huge role in helping my body deal with chronic GVHD. It also helped minimize the steroid weight gain, and kept me in better spirits (the steroids caused some mood swings and depression). It gave me a great new hobby, and I’m doing it for such a good cause—to raise money for patient aid and research! It’s one of the best things that came out of my transplant experience.

Buddy program keeps GVHD patients connected