Events

The IPPF has published a white paper focusing on the urgent needs of pemphigus patients.

March 16, 2021
The IPPF is excited to announce the publication of a white paper, “Elevating Awareness of the Pressing Needs of the Pemphigus Community.”  This paper is in response to the results of a Patient Forum held as part of our Virtual Patient Education Conference last October. The Patient Forum was sponsored by Principia Biopharma, a Sanofi Company, and brought together pemphigus patients, caregivers, patient influencers, healthcare professionals, thought leaders, and advocates to discuss the most important disease-related topics affecting the pemphigus community. The white paper discusses the consensus reached by the speakers and panelists related to the most urgent needs of pemphigus patients. It also includes decisive calls to action. 

During the Patient Forum, panelists discussed their experiences with delayed diagnoses and the physical, mental, and financial impact of pemphigus. The consequences of a delayed diagnosis to a patient’s health and well-being can be significant, therefore the speed and accuracy of diagnosis must be improved. Speakers discussed the high dosage use of corticosteroids and limited treatment options for pemphigus, which makes it clear that new treatment options are needed. In response to the need for new treatments, scientists in academia and the biopharmaceutical industry are currently working to refine and expand treatment options that are more tolerable and targeted. 

Based on the urgent needs discussed during the Patient Forum, the panelists and speakers agreed on the following calls to action: 

  1. Elevate awareness of pemphigus and the patient journey and perspective among key audiences, including clinicians, thought leaders, government agencies, and lawmakers, among others.
  2. Increase awareness of ongoing clinical trials of promising investigational candidates to improve participation in trials, with the goal of developing more effective and well tolerated treatments for pemphigus.
  3. Improve affordability of and access to therapies.

The white paper provides an in-depth analysis of the challenges facing pemphigus patients during both diagnosis and treatment. 

Access the Paper

Our fifth story in the Patient Journey Series comes from Fred Wish:

It was January 2007, and I was sitting across the desk from the second dermatologist I had seen in five months. For the second time, I was told that my condition was probably “seborrheic something-or-other” and was prescribed an alcohol-based topical steroid that I knew would be painful to apply. I had endured three months of increasingly widespread lesions on my scalp and back, but hadn’t associated those with the bad mouth sores and sloughing of my gums that started the previous summer.

The following week, I was scheduled for a tooth cleaning that I’d put off because I was afraid it would hurt. The poor dental hygienist probably never had performed such a bloody cleaning. When the dentist inspected my mouth, he immediately scheduled me for a biopsy. The result came back positive for pemphigus vulgaris (PV). Lucky me.

Actually, I was lucky—I lived within a short train ride of Manhattan and Langone Health at New York University (NYU), which meant I had access to medical professionals with extensive experience with PV. Even luckier, in early March of 2007 I came under the care of Dr. Jean-Claude Bystryn, one of the world’s premier pemphigus experts. Dr. Bystryn treated me until shortly before his death in 2010.

I was diagnosed with PV, was the patient of a top medical professional, had begun to manage my disease with corticosteroids, and had an extraordinarily supportive caregiver in my wife. I wasn’t even aware at the time that I was missing a crucial part of what I needed in my battle with my disease: I didn’t have the slightest clue about how to live with PV day-to-day.

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

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That’s when the IPPF came into the picture. Much of my career was spent associated in one way or another with the medical profession, which has perhaps made locating and comprehending detailed information about causes, treatments, side effects, insurance issues, etc., a bit easier for me than for some patients. My internet searches had turned up a ton of technical information and research papers about autoimmune blistering diseases, but not much about what it’s like to work, play, travel, or simply get out to a decent restaurant while dealing with stares and questions (and some well-intended but really bad advice) from friends and strangers. I felt alone. I knew there must be others out there who were struggling like I was, but until I found the IPPF website, I didn’t know how to connect with them. From my first tentative emails with Mei Ling Moore and Marc Yale, I knew: there were people who understood.

Of course, the IPPF website itself contains much information about the various forms of pemphigus and pemphigoid (P/P) as well as the services the IPPF provides. However, it has been the interaction with fellow patients through the peer health coaches, support groups, and the annual Patient Education Conferences, that have proven the most valuable to me. My work schedule kept me from attending a Patient Education Conference until 2014, when I traveled to Chicago and was able to meet so many people I had already encountered either through the IPPF website or various social media outlets. It was in Chicago that I learned of the potential of rituximab as a treatment option and attended meetings on topics such as relaxation techniques, dietary considerations, and the Awareness Ambassador Program (the outreach effort the IPPF put together to reduce the time gap between first symptoms and diagnosis). Just spending time with people who knew exactly what I was going through, who knew the instantaneous fear and rage that goes along with each new lesion, who were discovering how to find the shady spots at high noon, was an amazing comfort.

In Chicago, I not only signed on to help with the Awareness Program, but I also joined the Patient Registry, which has now been succeeded by the Natural History Study. Since then, I’ve attended Patient Education Conferences in New York (including a very chilly Mets-Yankees game!), Newport Beach, and Durham (where I re-established old friendships and met newer members of the P/P community). I’ve also met with members of my local support group; volunteered to help staff the IPPF booth at the Greater New York Dental Meeting in 2017 and 2018; provided P/P information to dozens of local dentists; and most recently advocated for the IPPF and supported legislation as part of Rare Disease Week on Capitol Hill.

I’m not writing all this to tell you what a good guy and solid citizen I am. I’m not a “joiner” by nature, and it surprises me that I’ve become involved as much as I have. The IPPF has provided such a solid foundation of support, both practical and intangible, to me over the years that I truly feel a part of the family. That’s what has instilled in me the impulse to roll up my sleeves and help out.

My PV has been in remission (no flares and no medication) for more than three years, but the IPPF continues to be an important part of my life. The Patient Education Series webinars help keep me up-to-date, and I look forward to each new issue of the Quarterly. I have already set aside time for the Patient Education Conference in Philadelphia this October.

Dealing with this ugly group of diseases is nothing any of us would have chosen. Make no mistake: I wish there wasn’t a need for this organization. I wish it had never been necessary to meet the patients, caregivers, and staff I’ve come to love and admire and whose friendship and commitment mean so much to me. But I am grateful every single day for having the opportunity to share this journey with them.

Give your share to show you care. Help patients like Fred

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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:

Ryan Stitt and Dr. Ricardo Padilla

On October 12, 2018, I participated in the IPPF Dental Day as part of the 2018 Patient Education Conference. Dental Day was hosted at the UNC Adams School of Dentistry by Drs. Donna Culton and Ricardo Padilla. As a dental student, I found this to be by far the most exciting and enriching experience of my dental school education to date.

Pemphigus and pemphigoid (P/P) patients traveled from different parts of the world to attend the conference. During the Dental Day event, dental and dental hygiene students were put into groups under the supervision of UNC faculty. We performed thorough extraoral (head and neck) and intraoral examinations on P/P patients. We discussed their diseases as they related to oral symptoms and oral care, and learned about the personal implications of living with P/P. Students provided patients with oral hygiene instructions and suggested products and techniques to aid in disease management. We also encouraged them to establish a dental home if they did not already have one.

As students, we learned about using the Nikolsky sign in the oral mucosa to aid in the diagnosis of P/P. In order to help dental students better understand P/P, patients allowed us to poke and prod their oral tissues. The initial examination gave us clues about the type of autoimmune disease that the patient might have, though definitive testing would still be required to confirm a diagnosis.

For me, one particular interview with a patient was impactful. She informed me that she lived in a town where access to medical care is limited. She explained that for the majority of her life, she had no idea what her disease was because pemphigus is such a rare disease, and she was delayed in being diagnosed. The conversation filled me with a feeling of purpose and provided an understanding of what it may be like to treat patients as a dentist specializing in oral disease diagnosis.

Dental Day facilitated a learning experience for both students and patients. For the students who participated, we were fortunate to perform clinical examinations on P/P patients. Patients were also given the opportunity to teach future healthcare providers about their autoimmune conditions. I believe that these types of extracurricular experiences make one’s dental school education truly amazing.

I want to acknowledge the hard work of the faculty and staff for hosting the event at our dental school. I cannot overemphasize what this wonderful experience has given me as a dental student. I am extremely grateful that I was able to meet so many P/P patients and learn firsthand about what it’s like to be afflicted with this type of autoimmune disease. I’d also like to thank the patients who participated and allowed us to learn more about their conditions. Since P/P are such rare and interesting diseases to study, I am hoping to attend the upcoming 2019 Patient Education Conference in Philadelphia in order to continue learning about the latest P/P information and disease management.

Ryan Stitt is a rising third-year dental student at the UNC Adams School of Dentistry. He enjoys treating patients in clinic and participating in group-based extracurricular activities. In his free time, Ryan designs and crafts zip lines at his home and practices playing the guitar.

Wow! The 2016 Patient Conference has already come and gone. It was an amazing experience for attendees and presenters alike. This year’s event focused on the importance of peer support and expert research, and there was a special emphasis on oral care. The conference was full of learning, laughs, and the formation of life-changing bonds.

The Hilton Garden Inn Downtown Austin is located close to some of the best food and entertainment in the city. Austin’s 6th Street has been a famous entertainment hub since the 1970s. It’s home to South By Southwest — Austin’s famous music and film festival — as well as the Pecan Street Festival, which attendees got to catch a bit of after the conference. The street itself is closed to vehicle traffic on Friday and Saturday nights and becomes a pedestrian paradise filled with lights, music, and bustling people.

Terry Rees, DDS, MSD, Director of the Stomatology Center at Texas A&M University College of Dentistry, and I started the conference by giving a joint continuing education presentation to local dentists and patient attendees on pemphigus and pemphigoid (P/P) and the reason why early diagnosis is so important. Dr. Rees covered the academic content of managing patient care, while I gave a personal testimony of my journey to obtain a diagnosis. Together, we presented the whole picture of diagnosing, treating, and living with an autoimmune blistering disease.

Thursday night’s Cocktail Hour, Awards Dinner, and Casino Night were all held at Eighteenth Over Austin — a beautiful venue with 180 degree views of the city skyline. Aimee Payne, MD, PhD, Associate Director of the Medical Scientist Training Program at the University of Pennsylvania, gave the keynote speech. This included an exciting glimpse into the potential breakthroughs of her current research. The IPPF Awards Dinner recognized many people who have worked hard, both in front of and behind the scenes, at the Foundation.

At Casino Night, patients, doctors, and researchers alike tried their hand at games of skill and luck to see who could gather the most chips by the end of the night. Marc Yale, IPPF Executive Director, served as MC, calling out the numbers of winning raffle tickets. Prizes included a Samsung Galaxy Tablet, FitBits®, Sonicare™ electric toothbrushes, Waterpik® flossers, and more!

Friday began with opening remarks from Dr. Rees and Marc Yale. Todd Kuh, IPPF Board Chairman, introduced the Board of Directors and staff.

Sergei Grando, MD, PhD, and a leading P/P expert from UC Irvine, gave a lecture on IVIG. Next, Victoria Werth, MD, Professor of Dermatology and Medicine at the University of Pennsylvania, and Member of the IPPF’s Medical Advisory Board, spoke of the treatments that are commonly used to treat our diseases. She covered why steroids and immunosuppressants work to treat P/P, as well as how they work. Dr. Werth also covered many of the side effects and complications that come with using such strong medications.

Kim Yancey, MD, Professor and Chair of the Department of Dermatology at the University of Texas Southwestern Medical Center in Dallas, covered the use of topical treatments in the care of patients with ocular, nasal, and oral disease involvement. He stressed the importance of regular checkups with eye doctors, dentists, and ENT doctors, as well as the role of dermatologists in managing lesions.

These lectures were followed by a Q&A session where patients and caregivers were given the chance to ask questions that were not answered in the lectures. Sessions like these give patients power over their diseases because they give them a chance to have an active dialog with experts.

After a short break, Animesh Sinha, MD, PhD, professor and dermatologist at SUNY Buffalo, gave a lecture on genetics. He explained certain genetic characteristics that most P/P patients share with one another and how blood samples collected at the IPPF’s Patient Conferences over the years have helped him in his research.

Dr. Rees participated in an oral care panel with Nancy Burkhart, RDH, EdD, adjunct associate professor at Texas A&M College of Dentistry and member of the IPPF Dental Advisory Council; Paul Edwards, MSc, DDS, FRCD(C), professor at Indiana University and member of the IPPF Awareness Committee and Dental Advisory Council; and Michaell Huber, DDS, professor at the University of Texas HSC San Antonio. This panel gave the patients a chance to ask questions that would help them improve their overall oral health. Topics covered included mouth rinses, brushing techniques, and the best kinds of toothbrushes for P/P patients.

After lunch, participants had the opportunity to choose from different breakout sessions.

The first group of sessions included topics as diverse as “below the belt” with A. Razzaque Ahmed, MD; clinical trials with Diana Chen, MD, MBA, FAAD; disease­-specific patient reported outcomes with Badri Rengarajan, MD; and ophthalmology with Dennis Kay, MD.

The next group included a sessions on insurance from BioFusion’s Dinesh Patel, IVIG from Dr. Ahmed, oral care from Dr. Rees and Dr. Burkhart, and Rituximab and next generation therapies from Dr. Payne.

The final breakout sessions featured Dr. Payne’s lecture, “Future Targeted Therapy of Pemphigus,” as well as ”Mindfulness Based & Positive Psychology with P/P” by Terry Wolinsky-McDonald, PhD; Dr. Ahmed’s “Pemphigoid Q&A”; and Dr. Sinha’s “Pemphigus Q&A.”

The day ended with Dr. Kay, Dr. Ahmed, Dr. Sinha, and Dr. Payne sitting for a Q&A session, followed by cocktails and cupcakes. Many attendees then made their way out to explore the best that downtown Austin had to offer.

Saturday was a day for patients by patients. The morning started with breakfast and another opportunity to bond with fellow patients. Camaraderie is so important with P/P. Our diseases can be isolating, and it was awesome to meet others who have walked the same path, many of whom are well on their way to remission.

Mei Ling Moore started the morning sessions with a guided meditation and de-stressing presentation, helping us all to be open to the day ahead.

Next, Valhalla Holeman led us through the emotional story of her son Laten’s struggle with pemphigus foliaceus. There were not many dry eyes during the presentation. Laten’s quiet strength — along with the support of his sister and brother, Myles and Coale, sitting next to him — was truly inspirational.

IPPF Peer Health Coaches Mei Ling Moore and Janet Segall, IPPF Board Member Dave Baron, and I led a patient-to-patient panel. There were so many good questions and comments, and it really seemed to bond our community more tightly together once again.

Roy Vongtama, MD, reinforced the mind-body connection in his lecture. He explained how we might not have control over the stressors in our lives, but we do have control over how they affect us. Dr. Vongtama then showed how posture, breathing, and meditation affect overall health.

IPPF Awareness Ambassador Coordinator Bryon Scott discussed the Awareness Ambassador program and simple ways we can all spread awareness in our networks and with our own dentist. Anyone interested in getting involved should email
ambassadors@pemphigus.org.

Marc Yale then spoke of the work he is doing to advocate at the state and federal level. Marc is a true gem to the foundation. He has lobbied for Rare Disease Day in California and has stormed Capitol Hill with the National Organization on Rare Disorders and the American Academy of Dermatology. Marc broke down barriers and empowered everybody in the room. He made us aware that we, as patients, have the power to change laws in this country. It was truly inspiring.

Todd Kuh then gave a lecture on his “Chasing Down Pemphigus” fundraiser. Todd shared the story of how he felt after being diagnosed with PV and how a single conversation inspired him to regain the active lifestyle he led before his diagnosis.

After Todd, it was my turn to present “The Power of You.” There was a time when I felt I had lost my voice to PV, the treatments, and the side-effects of the medication. But somebody told me that patients are the true experts because we live with the disease. That inspired me to find my voice again, and my presentation focused on the ways we can all be advocates and share our expertise.

After the final presentations, Dr. Rees and Marc gave their closing remarks and hopes for all P/P patients. Everybody was touched. After two days of intensive and inspiring lectures, attendees left feeling united. It felt like we mattered. Doctors cared about the plights of patients like us. Patients felt like they had renewed hope. Some reinforced old friendships from past conferences, while others forged new relationships. I’m looking forward to what the IPPF has to offer in 2017!

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