Jann Engel

Why do I participate in research?

“I used to walk between 2-6 miles daily and/or go to the gym. My work requires me to be on my feet all day, climbing stairs, being active. All of this came to a painful halt dramatically in January 2021 when I could barely limp instead of walking, my feet and hands would turn white, and I was in a lot of pain 24 hours a day from my waist down. I could barely roll to my side in my bed without pain. At first, my then primary care physician thought I had anemia as a result of my bloodwork. I told my job I just needed a couple of iron infusions and would be fine. Not quite. After many tests, visits, and changing doctors when it was obvious to me that I needed to, I was diagnosed September 2022 with Giant Cell Arteritis. I was terrified.

As of November 1, 2023, I was declared in remission, which is wonderful news. I am walking much longer distances now and at a more normal pace before claudication slows me down. I no longer have to run my hands and feet under scalding hot water to get blood to flow to them in the morning so that they move. 

Research is everything. We help ourselves and each other most by supporting the efforts of the VPPRN to obtain as much personal research from patient experience so that our brilliantly talented medical profession develops further understanding of vasculitis. By participating in the VPPRN, I know that I am providing practitioners with data so they can better understand vasculitis to improve my life and the lives of everyone touched by vasculitis. Please join me in making a difference.”

-Jann Engel