2018 Highlight: Patient Education Conference
The 2018 IPPF Patient Education Conference was held in Durham, NC from October 12-14, 2018. Our 2018 hosts were Donna Culton, MD, dermatologist and Assistant Professor at the University of North Carolina (UNC), and Ricardo Padilla, DDS, Associate Professor and Director of Maxillofacial Pathology Graduate Program at UNC. Dr. Padilla and Dr. Culton set a high bar for this conference. Guests stayed at the “Mansion on the Hill” DoubleTree by Hilton, Raleigh-Durham Airport at Research Triangle Park. Upon arrival, attendees were greeted by white rocking chairs, porch swings, and a sense of belonging. The hotel provided a relaxing and intimate environment for conference activities. The conference was an amazing opportunity for patients and their support systems to not only have direct access to IPPF staff, but also some of the leading minds who treat pemphigus and pemphigoid.
The conference kicked off with a special “Dental Day” at UNC School of Dentistry. Attendees were welcomed by UNC staff and students at the Chapel Hill campus. Dr. Padilla welcomed everyone and introduced me as the morning’s first speaker. I shared my journey with pemphigus vulgaris (PV) and encouraged everyone to find their voice and strength after being diagnosed with pemphigus or pemphigoid (P/P).
UNC dental hygienists Jennifer Brame, Elizabeth Kornegay, and Jennifer Harmon then spoke about oral hygiene and how to use different products when patients have oral lesions. Next, Dr. Katherine Ciarocca (UNC) and Dr. Padilla discussed the oral side effects of treatments used in P/P. After lunch, attendees were given the opportunity to have an oral cancer screening and a one-on-one dental examination that included self-care techniques. The afternoon also included a discussion panel with me and Dr. Si Om Lim (UNC).
Upon returning to the conference hotel, attendees were invited to a welcome reception on the veranda. It was a perfect ending to the first day of the conference.
After breakfast and receiving their conference gift bags, attendees began day two of the conference with IPPF Executive Director Marc Yale’s welcome and a video from Senator G.K. Butterfield, 1st District, NC, Rare Disease Congressional Caucus Co-Chair.
The first presentation of the day was Kenny Metcalf, a PV patient from California. Kenny shared his emotional journey that led to his career as an Elton John tribute artist. Attendees then had the opportunity to see Kenny perform later that evening during the IPPF Awards Dinner. Kenny’s story highlighted the struggles that many of us have experienced with P/P.
This year, the conference featured separate learning tracks for pemphigus and pemphigoid. This allowed attendees to focus on the information that was most relevant to them. Sessions were specific to each disease and provided excellent information. The pemphigoid session was moderated by Marc Yale and Dr. Padilla. Dr. Janet Fairley (University of Iowa) gave a great introduction to the disease. Dr. William Huang (Wake Forest University) then discussed topical treatments used in pemphigoid before Dr. Russell Hall (Duke University) covered steroids and immunosuppressants.
The pemphigus session was moderated by Dr. Culton and began with an overview of pemphigus by Dr. Grant Anhalt (Johns Hopkins). Dr. David Woodley (University of Southern California) then discussed topical treatments used in pemphigus, and Dr. Adela Rambi Cardones (Duke University) discussed steroids and immunosuppressants.
After a short break, attendees were treated to disease-specific uses of Rituxan® and intravenous immunoglobulin (IVIG) therapy in pemphigus or pemphigoid. Dr. Ron Feldman (Emory University) and Dr. Huang led the discussion on pemphigoid, while Dr. Anhalt and Dr. Culton led the discussion on pemphigus.
On Saturday afternoon, Dr. Luis Diaz (UNC) shared 40 years of research in his keynote address, “Lessons from Endemic Pemphigus Foliaceus.” Dr. Diaz has been involved with the IPPF from its inception. Though primarily based at UNC, Chapel Hill, he has also conducted pemphigus research in Brazil for over 30 years. His research has included disclosing the immunopathological mechanisms operating in PV and pemphigus foliaceus (PF). Dr. Diaz is a true gem in our community.
After the keynote, there was an oral care discussion panel with Dr. Padilla, Dr. David Sirois (NYU), Dr. Nancy Burkhart (Texas A&M), and Dr. Joel Laudenbach (Carolinas Center for Oral Health). Attendees then attended lectures on the genetics of pemphigus and pemphigoid by Dr. Animesh Sinha (University of Buffalo) and “Future Trials of Targeted Therapies in Pemphigus” with Dr. Hall and Dr. Fairley.
Later, Dr. Culton introduced Jeff Weisgerber, a PV patient from North Carolina who has participated in two different clinical trials. Jeff shared his experience with the hope of breaking down barriers relieving potential fears patients might have about study participation. Marc Yale then discussed the IPPF Natural History Study and the importance of patient participation. Dr. Brittney Schultz (University of Minnesota) followed Jeff by discussing quality of life issues with P/P. Kate Frantz, IPPF Awareness Director, held an on-the-spot Awareness Ambassador training before Genentech representatives Jocelyn Ashford, Esther Newman, Kristine Amor Surla, and Kenia Carrillo Perez gave a great overview of Genentech Access Solutions and what they can offer to patients with P/P.
Following the day’s sessions, attendees had just enough time to change before the evening’s program. During the cocktail hour many hoots, howls, and laughs were had at the photo booth. The evening’s main event was the IPPF Awards Dinner, where individuals were recognized for their extraordinary service to the IPPF community. The highlight of the evening was Kenny Metcalf performing as Elton John. When Kenny entered the room, it was as if Elton John from the 1970s had arrived. He sat down at the piano and spoke to the crowd in a British accent, played the piano, and sang. The entire room couldn’t help but swing to the music and sing along. Many of those in attendance showed off their best moves on the dance floor. After a long day of learning, it was the perfect way for attendees to relax with new friends.
Marc Yale opened Sunday by introducing an extraordinary patient with PV, Porter Stevens. Porter shared his patient journey and how it propelled him to use social media to create his legacy and use it as a way to reach others with our diseases. Dr. Annette Czernik (Mt. Sinai Hospital, NY) and New York/Tri-State Support Group Leader Esther Nelson then shared an open discussion about the importance of being an informed patient and the doctor-patient relationship. The first morning session ended with a panel discussion led by IPPF Peer Health Coaches Mei Ling Moore, Rudy Soto, and Janet Segall.
After a quick break, attendees had the choice to attend a variety of workshops throughout the morning. These included “Infections in Pemphigus and Pemphigoid” with Dr. Cardones; “Ocular Disease” with Dr. Julie Skaggs (UNC Chapel Hill); “Drug Development” with Dr. David Rubenstein (UNC Chapel Hill); “Oral Care & Maintenance” with Dr. Nancy Burkhart; “Nutrition” with Kelly Calabrese (PV Patient, Optimal Wellness Solutions); “Women’s Health Issues with P/P” with Dr. Alexis Dieter (UNC Chapel Hill); “North Carolina Rare Disease Advisory Council” with Sharon King (North Carolina Rare Disease Advisory Council) and Tara J. Britt (Associate Chair, Rare Disease Advisory Institute, UNC School of Medicine); “Stress Management” with Mei Ling Moore (IPPF); “Mental Health Issues” with Lynne Mitchell (MES, MEd, RSW, Toronto, Canada); “Wound Care” with Dr. David Woodley; “Men’s Issues with Pemphigoid Disease” with Dr. Ron Feldman; and “Caregiving” with Janet Segall (IPPF).
After the morning sessions, Marc Yale gave his closing remarks.
As the conference ended, it was time to say goodbye to old and new friends. Many new support connections were made, and it truly is a blessing to be part of such an amazing event. The openness of doctors and healthcare providers really gave patients and caregivers access to some of the greatest minds studying these diseases. While we only had a brief time together, it felt like the relationships created will last a lifetime—there is something about talking with somebody “who just gets it.” We hope everyone that attended the conference carries the positive messages with them and knows that we’re all in this together.