Events

Help patients like Toby connect with the resources they need to live—and thrive—with pemphigus and pemphigoid.

Donate Now

Our sixth story in the Patient Journey Series comes from Toby:

When I was diagnosed with pemphigus vulgaris (PV) in late 2010, like most patients I’d never heard of the disease. Also, like most, I’d endured about six months of worsening symptoms before finding a doctor who was able to help me. After starting me on medication, the next thing my dermatologist did was to tell me about the IPPF. He encouraged me to reach out to them if I needed support, but I shelved the idea for a long time because I was sure I could manage by myself. I had the mistaken idea that if I followed my doctor’s instructions, I would “get better,”and soon.

Having PV was a wake-up call for me, however, as the disease proved to be tenacious, unpredictable, and unmanageable in my case on prednisone and CellCept alone. I embarked on a series of rituximab infusions ⎯ four over the past eight years ⎯ which have helped to control my symptoms. But the most important part of that wake-up call was the realization that I couldn’t go it alone. I called the IPPF nearly a year after diagnosis and talked to a Peer Health Coach, and the cloud lifted right away. For a while I attended support group meetings in the New York area. It was good to meet others who were facing the same challenges I was.

When I moved to New Hampshire three years later, I researched dermatologists to find one who was familiar with PV. Lo and behold, one turned up at UVM Medical Center in Burlington, VT, who had worked with IPPF Medical Advisory Board Member Dr. Victoria Werth at the University of Pennsylvania and co-authored an article on blistering diseases. I emailed Dr. Werth and asked her if she recommended this doctor, and she sent a thoughtful, encouraging response. I remained under the care of that doctor for five years until this year, when I moved to North Carolina.

This was a lucky move in many ways. Last October I attended the IPPF annual conference in Raleigh, NC, co-hosted by Dr. Donna Culton at UNC’s School of Medicine, and she was incredibly knowledgeable and inspiring. Because the IPPF set up the conference to make it easy for patients, staff, and physicians to mix, I was able to have one-on-one conversations with anyone I liked. There were cocktail hours, meals, and time between presentations, and everyone was approachable. I sought out Dr. Culton to say hello and chat with her. Afterwards, I told my daughter Kate, who lives in the area and had attended the conference with me, that I could do worse than moving down to NC and having Dr. Culton as my dermatologist. Then I made it happen. Two weeks before I packed up my car and drove the 800 miles with my cat to my new home, I had an appointment with Dr. Culton on the calendar!

Having excellent care and support (and even an infusion center) right here in my neighborhood gives me a sense of security and well-being, and I can trace that support directly back to the IPPF, who helped me find the way. Thank you, IPPF!

Give your share to show you care. Support patients like Toby,

Donate Now

Every day, our patient services team hears stories from our community about what it’s like to live with pemphigus and pemphigoid. From getting diagnosed to finding the right doctor to thriving post-treatment, many patients express similar frustrations. And yet, there’s a common hope that runs through many of the stories we hear at the IPPF.

Each week through August and September, we’re featuring a story that highlights a specific part of the patient journey. OUR HOPE is that by sharing stories from our community, more patients and caregivers will realize they are not alone.

Check out the rest of the Patient Journey Series:

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.

Patient Educator Hannah Heinzig at UMKC

The end of the year is a great time to look back at our programs and assess the progress we’ve made toward reducing diagnostic delays of pemphigus and pemphigoid. Our patient educators continued to reach more and more dental students at schools across the country.

This infographic illustrates the work our IPPF patient educators have done since 2014:

Hello all! Working for the IPPF has been something I have been interested in doing for about five years, since my pemphigus vulgaris finally got under control. I knew from my first contact with the Foundation that this is an amazing group of people. I am proud of the way our community pulls together and rallies for each other; it’s amazing how we sincerely care about one another.

The position of Outreach Manager is new to me, as well as to the IPPF. This position was created to be a link between Patient Support and the Awareness Campaign. While these programs have different focuses, they are united by the common goals of education, early diagnosis, and promoting the best treatments for P/P patients.

As a result, half of my time will be spent supporting patients. If anybody touched by our diseases has a question, comment, or concern, I am their first point of contact. It is my responsibility to provide all who contact me with clear, precise information and resources. I will also be creating and revising material for print and online, as well as helping to facilitate local support groups, meetings, and patient education calls.

The other half of my job will be spent raising awareness of P/P in the medical community with the goal of reducing patient suffering and diagnostic delays. Currently, the Awareness Campaign focuses on dental outreach. I will be coordinating patient presentations at universities and looking to recruit, train, and supervise other patient speakers and volunteers. I will also take over coordinating exhibit booths at conferences for dentists and medical professionals. It is my goal to pass along what I’ve learned and use my knowledge to make a difference in the lives of P/P patients. And the IPPF has given me this wonderful opportunity to do so.” It sounds like a lot of work — and it is — but I am up for the challenge! Because of my status as a PV patient and my past work in the healthcare field, I feel that I am qualified to work with both communities simultaneously. I promise to work tirelessly to promote quality of life for the members of our community, as well as in the dental, medical, and nursing communities.

I know I would not be where I am today if it weren’t for the IPPF community. So many of you provided me with support, compassion, and encouragement during one of the lowest periods of my life. I was young when I was diagnosed. I was scared and felt isolated. But my IPPF friends changed all of that. I want to do that for others. It is my goal to pass along what I’ve learned and use my knowledge to make a difference in the lives of P/P patients. And the IPPF has given me this wonderful opportunity to do so.

Please know you can contact me by email at becky@pemphigus.org or by phone at  (916) 992-1298 x105. I will work to get you the answers you need. I am here for you.

Dr. David Sirois and Becky Strong presenting at NYU.

By sharing their stories with students at dental schools across the United States, the IPPF Awareness Campaign’s Patient Educators aim to increase retention of pemphigus vulgaris (PV) and mucous membrane pemphigoid (MMP) curriculum. Each lecture consists of a short clinical video on PV/MMP followed by a Patient Educator presentation and Q&A session, combining clinical information with the emotional appeal of a real patient’s struggle with delayed diagnosis.

Since Becky Strong gave the first IPPF Patient Educator presentation at the University of Michigan in March of 2014, she and Hannah Heinzig have presented to a combined 1,705 students, faculty, and staff at 12 schools. Steady requests for future presentations put the Awareness Campaign on track to surpass its goal of visiting at least 19 dental schools by the end of 2016.

To see Becky and Hannah in action, check out the new Patient Educator highlight video at pemphig.us/pe-highlights.

What are Pemphigus and Pemphigoid
Patients
Healthcare Professionals