An interview between Dr. Brittney Schultz and Becky Strong, IPPF Outreach Director, was published by the Women’s Dermatological Society on June 27, 2022 and highlights the importance and value for physicians and patients in engagement with patient foundations. Becky Strong is a patient with pemphigus vulgaris. For Becky, her journey spanned 17 months, seven physician specialists, multiple encounters with her dentist, and several rounds of incorrect treatments and procedures before correctly being diagnosed with pemphigus vulgaris. She’s a registered nurse living in Michigan with her husband Tim and two children. Currently, Becky is the Outreach Director for the International Pemphigus & Pemphigoid Foundation (IPPF), a patient support organization. Becky is responsible for education and awareness related to medical and dental professionals, dental students, and patients at the IPPF. She also spends time advocating at the federal level for patients with rare diseases.
Brittney Schultz is a dermatologist at the University of Minnesota and cares for patients with autoimmune blistering diseases. She has been engaged in the International Pemphigus and Pemphigoid Foundation for several years. While in residency, she previously partnered with the IPPF and her faculty mentor Dr. Nicole Fett to study quality of life in patients with pemphigus. She was a speaker at the IPPF 2018 Annual Patient Conference and nominated for a Star Award for Patient Support. She frequently refers her patients to the IPPF and finds them invaluable in patient advocacy and research.
Becky, tell us about your experiences in joining the International Pemphigus and Pemphigoid Foundation (IPPF).
I joined the IPPF as a patient looking for information and shared experiences with others with pemphigus vulgaris (PV). It was amazing to have the opportunity to talk to somebody else who “just gets it” without explanation. My first annual patient meeting was amazing and I learned so much from the doctors who presented at the meeting as well as real world tips and tricks from other patients.
That meeting was the first time that I had ever met anybody else with PV or a sister disease, pemphigoid, let alone somebody else who could pronounce it. I sincerely thought I would be walking into a movie-like portrayal of World War I field hospitals – with people sitting around in bandages and moaning. Instead, I found a room of vibrant, kind and sincere people who looked like me and had “pemphi-what” too.
More importantly, it was at this patient meeting that I realized what a dynamic organization the IPPF really was. IPPF Annual Patient Education Meetings bring doctors, researchers, scientists, and patients together to learn about current disease treatments, research in the disease space and pipeline medications all at a digestible and easy to understand way with a lot of networking between patients and experts. I realized that my doctor was part of a larger community of physicians who cared for and about patients like me – who were doing research to better understand pemphigus and who also wanted to find better treatments that worked faster. My doctor worked at a major university medical teaching institution that worked with many other doctors and researchers on pemphigus and pemphigoid. Toward the end of the first day of the conference, a doctor said that he was the expert in treating this disease but we, the patients, were the experts in living with these conditions. He went on to say that physicians could learn a lot from their patients about what they experience with this disease. I went home and took those words to heart. I offered to speak to the students and residents that were with my doctors and let them know that I would be willing to share my experience and let them ask questions that they wouldn’t normally ask. My oral medicine specialist took me up on this offer and within a few months, I had the opportunity to share my own story at the university’s School of Dentistry Grand Rounds.
I asked the IPPF for information on their support services to share with the dental school since my own doctors weren’t aware of the IPPF. In exchange, I wrote an article for the Quarterly – the journal of the IPPF. This article would change my life, and I became the first Patient Educator who shared my journey with other dental schools. Eventually, I was asked to become the IPPF Outreach Manager and work full-time to provide support and education to the IPPF community. Currently, I am the Outreach Director.
Read the full interview here.
