Accelerating Awareness: The Vital Role of Participation in Dermatology, Nursing, and Oral Medicine Research Meetings

Becky Strong

Certain conditions can be particularly challenging to diagnose and manage in dermatology, oral medicine, and nursing. Among these are pemphigus and pemphigoid (P/P), a group of rare autoimmune blistering diseases affecting the skin and mucous membranes. While P/P may not be as widely known as more common conditions, such as eczema or psoriasis, we know from personal experience that their impact can be profound.

One key strategy in tackling these diseases is raising awareness among those who will see these diseases first: medical, dental, oral health, nursing professionals, and researchers in these fields. This is why it’s crucial that the IPPF participates in events each year. Recently, we attended the following meetings: the 2024 American Academy of Dermatology (AAD) Annual Meeting; the 2024 International Association for Dental Research/ American Association for Dental, Oral, and Craniofacial Research/Canadian Association for Dental Research (IADR/AADOCR/CADR) General Session & Exhibition event; the American Academy of Oral Medicine (AAOM) 2024 Annual Conference; and the 2024 Dermatology Nurses’ Association (DNA) Annual Convention. These events provide platforms for sharing vital knowledge, experiences, and advancements in the field, ultimately leading to better understanding and management of conditions like P/P.

In addition to attending the meetings, we also had the opportunity to be a part of multidisciplinary panels at the IADR/AADOCR/CADR and the AAOM meetings. Having experts from multiple disciplines helps healthcare professionals understand the network of experts that patients need in order to take care of their whole person. These meetings encourage networking between multiple fields and help to grow the understanding of the connection between oral and overall health.

Accelerating Diagnosis Times

One of the most significant challenges in managing P/P is the delay in diagnosis. Patients often endure months, if not years, of uncertainty and misdiagnoses before receiving an accurate diagnosis. This delay prolongs suffering and keeps patients like us from leading “normal” and productive lives. There isn’t one magic pill that works to control everybody’s disease and put us into remission quickly, so learning about common treatments, as well as repurposed medications and new medications in the pipeline, can help doctors manage our disease better—and help the IPPF learn where to direct research and advocacy efforts.

By participating in these meetings, healthcare professionals gain access to the latest diagnostic techniques and guidelines from experts in our field, many of whom are members of the IPPF Medical Advisory Council. They can learn about the subtle clinical signs that may indicate P/P and the appropriate diagnostic tests to confirm the diagnosis more promptly. They also learn empathy from what patients endure to find a diagnosis and treatment. This knowledge can significantly accelerate diagnosis times and improve patient outcomes. But most importantly at these events, we’re able to evaluate what is needed to help foster future research.

Sharing the Patient Experience

An invaluable aspect of these meetings is hearing directly from P/P patients. Their experiences provide unique insights into their challenges, the impact on their quality of life, how living with P/P has affected family and social relationships, and their care and support needs. When medical and dental professionals engage with patient perspectives, they develop a deeper understanding of diseases beyond textbooks and research papers. This engagement fosters empathy and drives healthcare providers to tailor their approaches to better meet patients’ needs. There is a sincere interest in learning how they can better advocate and support their patients with P/P.

IPPF Support

The IPPF plays a crucial role in supporting patients and healthcare professionals. Through the participation in these meetings, the IPPF can provide educational opportunities and resources for healthcare providers; inform the medical, dental, nursing, and research communities about IPPF patient support services; and help lead advocacy efforts.

The IPPF works diligently to network with healthcare professionals and other patient organizations. This helps grow the network of P/P providers worldwide. Networking at these events provides us with the opportunity to learn from other organizations regarding professional education, their patient and community support initiatives, and advocacy goals.

Encouraging Research

Research meetings are essential for the IPPF to foster collaboration and drive medical and dental research advancements. It allows the IPPF to share P/P patients’ needs, new findings, discuss challenges, and brainstorm solutions. By accelerating progress in understanding the underlying mechanisms of P/P, researchers can develop more effective treatments and, hopefully, one day, a cure.

Participation in national and international dermatology, oral medicine, nursing, and research meetings is instrumental in bringing P/P awareness to the forefront, accelerating P/P diagnosis times, sharing the patient experience, accessing support from similar organizations, and encouraging medical and dental research. By actively engaging in these events, the IPPF can drive healthcare professionals to make a significant difference in the lives of patients living with these challenging conditions.

Becky Strong is the IPPF Outreach Director. She was diagnosed with PV in 2010 and is currently in remission. She lives in Michigan with her family.