Cutaneous T Cell Lymphoma (CTCL), a form of non-Hodgkin’s Lymphoma, typically starts with itchy raised red patches and/or thick build-ups of skin on the body. Because of these common symptoms, the ailment is often misdiagnosed as eczema, chronic dermatitis, or psoriasis. Most CTCL cases cannot be cured, but treatment methods can significantly improve one’s health and quality of life.
As the clinical lead nurse in Extracorporeal Photopheresis, Mia Perry, RN, regularly treats CTCL patients. Reading that the disease primarily impacts African American males, she wanted to spread awareness to members at her church, the Mt. Airy Church of God in West Philadelphia. With support from a Penn Medicine CAREs grant, Perry started the CTCL Community Education initiative. She and guest speakers, such as Filiberto Cedeno-Laurent, MD, PhD, CTCL, fellow at HUP, address members of her West Philly congregation, discussing symptoms, treatment, and other aspects of the condition. She always recommends that, if individuals suspect they may have CTCL, they should obtain a blood test with their primary care doctor to confirm.
Starting with a men’s breakfast, Perry has brought information and educational materials to many other church events, with increasing success in reaching members of the congregation. “Education is power,” she said. “You want to empower the patient and make them more aware of what’s out there. The disease is on the rise and affects this community.”
Penn Dermatology’s Cutaneous T-Cell Lymphoma Clinic has the largest referral program in the nation, but finding candidates for treatment is not easy. Perry said women in the congregation are also invited to the events in the hope that they can encourage the men in their lives to take a greater role in managing their health. “It’s sometimes tough to get men on board with health-care issues, but the ‘Men to Men’ group at my Church is eager and concerned about their health and welfare,” she said. “We want to get more health issues discussed and educate them.”
Perry is optimistic that she will reach many of them, but even helping a few with CTCL will make the efforts worth it.
“Success will be when more people can’t say that they weren’t aware, because now we’ve educated them and provided the tools for them to go to their primary care physician and take action.”
Photo caption: Mia Perry (r.) with Susan Thornton from the Cutaneous Lymphoma Foundation.