Sharon Hickey never thought she could help someone in Uganda from her home in rural Pennsylvania. She is an avid community volunteer with an adventurous streak. And when she’s not trying to save the world, you can find her running around the house with a shovel or a paintbrush completing another project.
But back in 1994, she was sick and she didn’t understand why. Her glands were swollen, she had multiple canker sores, she was exhausted all the time, she had a spot on her forehead, and swallowing was so painful that it hurt her ears. When she reached into her throat and found blood on her finger, she knew something was seriously wrong. A biopsy confirmed she had pemphigus vulgaris (PV).
PV is the most common type of a group of rare autoimmune disorders collectively called pemphigus. Symptoms include a progressive blistering of the skin and/or mucous membranes. PV is caused by autoantibodies interfering with proteins that bind cells together in the upper layer of skin, leading to blistering. It is painful, disfiguring, and potentially fatal. An estimated three of every 100,000 people are diagnosed with PV.
Hitting The Books
When Sharon was diagnosed with PV in 1995, most people were unaware of autoimmune diseases other than HIV/AIDS. She was scared to share what she was going through with anyone other than her husband. In the initial months after her diagnosis, her main source of information about PV was from medical books at her local bookstore. She and her husband Jim were scared because every case of PV that they read about was terminal. They didn’t know how to come to terms with their new reality.
A few months later, someone gave her the contact information for someone at the International Pemphigus and Pemphigoid Foundation (IPPF), who helped Sharon find a great doctor and the support she needed. Initially, she started taking steroids, but there were no visible improvements. After changing doctors, her steroid doses were doubled, and Sharon went into remission. She felt so much better that, following retirement and with her symptoms under control, she began volunteering with IPPF as a peer health coach. In this role, she helped other people by providing education and encouragement in their first weeks following diagnosis and assisting them in learning how to live with PV. Sharon would tell them, "One day you will wake up and PV will not be the first thing you think of. On that day, we’ll both be winners."
No More Buzzing
In 2006, Sharon had a significant flare up when lesions destroyed five inches of her esophageal lining, so she worked with her doctor to find a more lasting treatment plan. Sharon compared her health struggles over the years to an unfortunate situation in her home. “One time we had a bee infestation in our house and we had to call in an exterminator. It was crazy because within two days I said to my husband, ‘Wow the house isn’t buzzing anymore.’ And, that is what I went through. I went from buzzing to not buzzing and it was great.”
Unfortunately, seven years after her own diagnosis, PV had another surprise in store. Sharon’s brother began exhibiting symptoms of the disease and, due to her personal experience, she was able to assist him in a rapid diagnosis. Meanwhile, in addition to her IPPF work in the U.S., Sharon’s involvement with the organization expanded internationally, which is how she learned of a young boy from Uganda named David.
The IPPF and Sharon first came across David’s story online through a British news outlet. David had open and draining lesions, his mother had died, and his father had disowned him because he feared his son had demons. When they saw his photo, they thought his sores looked very similar in appearance to those that form as a result of PV. Sharon helped arrange for him to be tested and David was diagnosed with a form of pemphigoid. Pemphigoid is a rare autoimmune disease similar to PV, however it affects a deeper layer of skin and the sores are typically less fragile than those associated with PV. After diagnosis, David received proper treatment and is now living in an orphanage where he attends a school affliated with a local medical clinic - he loves math! He and Sharon remain in close touch, and she supports David financially. Her goal is to visit David in Kampala next year. “I have learned that you don’t have to live near someone to be able to have an impact on their life.”