dermatology

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.

The following was published on May 25, 2022 in Practical Dermatology.

The Global Dermatology Coalition, a patient-led, multi-stakeholder group of organizations, has launched during the 75th World Health Assembly in Geneva. The Global Dermatology Coalition includes dermatology patient organizations, health care professionals (dermatologists and dermatology nurses), researchers, and industry.

“Collaborative action is needed to change the difficult reality faced by skin patients and for this reason we have established the Global Dermatology Coalition. Together, our organizations are actively working to improve patient outcomes globally,” says Marc Yale, Board President of the International Alliance of Dermatology Patient Organizations (also knowns as GlobalSkin) and Chair of the Global Dermatology Coalition Steering Committee. “This would mean improved access to the diagnosis, care, treatments and support they need, when they need it – no matter where they live in the world. The Coalition speaks as one voice because people living with dermatological diseases, their caregivers and their families deserve to live without stigma, for their diseases not to be minimized and to achieve a higher quality of life.”

Diseases of the skin, mucosa, nails and/or hair are a leading cause of global disease burden (GDB), affecting nearly 900 million people in the world at any time and are the fourth most frequent cause of human illness globally. Dermatologists diagnose and treat more than 3,000 different diseases, including atopic eczema, psoriasis, vitiligo, albinism, acne, alopecia and thousands of rare skin diseases. Dermatological diseases cause substantial pain, disfigurement, disability, and stigma while they also lead to serious comorbidities and significant psychological, social and financial burdens for patients and their families. Theses diseases can be inflammatory, infectious and malignant, and are among the most prevalent and disabling disorders, particularly in low resource countries.

Formed in 2022, the Global Dermatology Coalition will advocate to the World Health Organization and other decision makers globally to elevate the healthcare prioritization of dermatological diseases.

Read the press release here.

We’re excited to share that in November of 2021, the IPPF’s Marc Yale was named as President of the Board of Directors of GlobalSkin. Marc is the current IPPF Research and Advocacy Coordinator, and he was the IPPF Executive Director from 2016-2020.

Marc Yale was diagnosed in 2007 with cicatricial pemphigoid. Like others with a rare disease, he experienced delays in diagnosis and difficulty finding a knowledgeable physician.

Eventually, Marc lost the vision in his left eye. This inspired him to help others with the disease. In 2008, he joined the International Pemphigus & Pemphigoid Foundation (IPPF) as a peer health coach.

Since then, Marc has worked with people to improve their quality of life and encourages them to become self-advocates. In 2009, he helped develop the Pemphigus and Pemphigoid Comprehensive Disease Profile giving experts insight into the patient perspective. In 2016, he was asked by the IPPF leadership to become the executive director of the foundation.

Marc currently resides in Ventura, California with his wife Beth and daughter Hannah.

About GlobalSkin

The International Alliance of Dermatology Patient Organizations (IADPO)—also known as GlobalSkin—is a unique global alliance serving patient organizations to improve the lives of dermatology patients worldwide. Based in Canada, the nonprofit is focused on three pillars: research, advocacy, and support.

GlobalSkin envisions a world in which people living with dermatological diseases and skin traumas can easily access the care and treatment they need, when they need it, and can live without stigmatization, persecution or economic disadvantages due to their conditions.

GlobalSkin is working with 185 patient association members—located in 62 countries representing more than 50 disease areas—to improve the lives of those affected by dermatological conditions throughout the world by:

initiating dialogue and advocating for access to new and existing treatments, and dermatological care to improve patients’ quality of life;
raising the awareness of the incidence of, and the challenges for, people living with serious dermatological diseases to create better understanding; and
supporting members and not-for-profit dermatology patient organizations through education, global campaigning, sharing of best-practices and beneficial networking opportunities to strengthen support for patients and build a strong, inclusive movement;
building special focus communities; and
conducting patient-initiated research.

GlobalSkin appeals as one voice to the World Health Organization and other key influencers to recognize the debilitating nature of dermatological disease so that more resources for research and treatment options are made readily available to those afflicted and in need of help.

The following has been provided by the International Alliance of Dermatology Patient Organizations (also known as GlobalSkin).

The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is inviting pemphigus and pemphigoid patient community members to participate in a unique research project where the dermatology patient is the expert and their opinion truly matters.

With the help and guidance of dermatology patients around the world, the Global Research on the Impact of Dermatological Diseases (GRIDD) project aims to develop a global instrument to measure the impact of living with skin diseases on a global scale. Further, it will document patient experiences including the extent of disease impact and burden for patients and their families.

By participating in GRIDD, patients will help design a new and credible measurement tool (questionnaire) that fully explains the impacts and challenges patients experience.

Dermatology patients are needed!

The GRIDD project is currently in Phase 3 and focused on a Patient Data Verification Delphi. The goal of the Delphi is to gather impact data from 2,000 adult dermatology patients representing as many different dermatological diseases as possible and from all regions of the globe.

As a participant, you would be asked to take part in two surveys – one now and then one in two
months. The survey will ask you questions about your experience living with pemphigus and pemphigoid and how it impacts your life and how much of a burden it is on your family.

By taking part in the Delphi and completing the two surveys, you will be making an important contribution to improving the lives of pemphigus and pemphigoid patients and all dermatology patients around the world now and in the future.

Make YOUR IMPACT: Take the DELPHI Survey Now

For more information about GRIDD or GlobalSkin please visit: globalskin.org/research

On March 2, 2019, Principia Biopharma Inc., a late-stage biopharmaceutical company dedicated to bringing transformative oral therapies to patients with significant unmet medical needs in immunology and oncology, today announced Phase 2 clinical data from the Believe-PV study for PRN1008 as part of the Late-breaking Research: Clinical Trials program at the American Academy of Dermatology (AAD) annual meeting in Washington D.C. PRN1008 is being developed for the potential treatment of pemphigus, including pemphigus vulgaris (PV) and pemphigus foliaceus (PF). Confirming interim clinical results previously reported, the Phase 2 study reached the primary efficacy measurement of control of disease activity (CDA) on low dose corticosteroids.

“The primary goal of treating patients with pemphigus is to control the disease and heal the skin, however a significant challenge is to avoid adverse events associated with the prolonged use of corticosteroids that are typically required to achieve clinical improvement,” stated Dr. Dedee Murrell, Professor and Head of the Department of Dermatology at The St. George Hospital Clinical School, University of New South Wales in Sydney, Australia and the lead principal investigator. “PRN1008 has the potential to rapidly and effectively treat patients’ disease, while significantly reducing the exposure to moderate to high corticosteroid doses.”

The open-label Phase 2 study enrolled 27 patients with newly diagnosed and relapsed, mild to severe pemphigus (including both PV and PF). Twenty-four patients were treated with oral PRN1008 and low dose corticosteroids (LDCS; <0.5mg/kg/day) for twelve weeks, with twelve weeks of follow-up. The primary endpoint was CDA (where new lesions cease to form, and existing lesions begin to heal) at Week 4. Other secondary endpoints included complete remission rates and reduction in anti-desmoglein autoantibody levels.

Read the full press release here.

On February 22, 2019, Principia Biopharma Inc., a late-stage biopharmaceutical company dedicated to bringing transformative oral therapies to patients with significant unmet medical needs in immunology and oncology, announced that an abstract has been accepted for oral presentation at the Late-Breaking Research during the 2019 American Academy of Dermatology annual meeting in Washington, D.C.

The abstract, “Final results of the Believe-PV proof of concept study of PRN1008 in pemphigus,” will be presented as part of the Late-Breaking Research: Clinical Trials on Saturday, March 2, 2019 at 2:10pm ET in Ballroom A of the Walter E. Washington Convention Center.

About Principia Biopharma
Principia is a late-stage biopharmaceutical company dedicated to bringing transformative oral therapies to patients with significant unmet medical needs in immunology and oncology. Principia’s proprietary Tailored Covalency^® platform enables Principia to design and develop reversible and irreversible covalent, small molecule inhibitors with potencies and selectivities that have the potential to rival those of injectable biologics yet maintain the convenience of a pill. PRN1008, a reversible covalent BTK inhibitor, is being evaluated in a Phase 3 clinical trial in patients with pemphigus, an orphan autoimmune disease, and in a Phase 2 clinical trial in patients with immune thrombocytopenic purpura, a rare hematological disease. PRN2246, a covalent BTK inhibitor which crosses the blood-brain barrier, has completed a Phase 1 clinical trial in healthy volunteers, and has been partnered with Sanofi for development in multiple sclerosis and, potentially, for other diseases of the central nervous system. PRN1371, a covalent inhibitor of Fibroblast Growth Factor Receptor (FGFR) is being evaluated in a Phase 1 trial in patients with bladder cancer. For more information, please visit www.principiabio.com.

Read the full press release here.

Living with a bullous skin disease is a challenge in more ways than one. In addition to taking medication we also need to be taking supplements, avoid certain foods and spices, take caution in how we move and bathe, and relax to reduce stress.

We also need to take extra precautions against the sun’s harmful rays…more so than the average person who does not have pemphigus or pemphigoid.

It isn’t always a sunny day that can bring the harmful rays. Cloudy days can be deceiving – you can get your worst sunburns through the clouds. Reflections from the water in swimming pools, lakes, oceans, etc. increase the harmful effects of the sun’s rays as well as the reflections from the snow when skiing.

Women also need to make sure that their foundation has an SPF ingredient – this was told to me by the national makeup advisor for Dior. I never knew this! But it does help…even if we don’t actively stay out in the sun and are just running around doing errands.

According to the American Academy of Dermatology:

“Dermatologists recommend using a sunscreen with an SPF block of at least 30, which blocks 97% of the sun’s rays. Just make sure it offers a broad-spectrum (UVA and UVB) protection, an SPF of 30 or greater, and is water resistant.”

Before trying to figure out which brand is the best to buy, discuss with your dermatologist. He/she can make suggestions for you based on your skin’s level of activity.

Don’t forget your ears, too! Ear lobes are very sensitive and need protection. For those of you with scalp involvement, it is best to consult with your dermatologist who will recommend what sunscreen products are best for the scalp. Hats are advisable when venturing outside. Solid hats…not straw as the sun’s rays will stream through the weaves and cause damage! Take extra care with the “driver’s arm” — you know, your arm that is exposed to the sun when you’re driving? The sun’s rays are intensified through the glass windows. Best to be sure you are either wearing long sleeves or extra sunscreen. If you are going in the water, sunscreen needs to be reapplied often.

UV radiation also impairs the skin’s immune system in alarming ways. Sun exposure reduces the number of watchdog cells that help recognize and respond to antigens, and alters their function so they are as effective as dozing prison guards. “This effect on immune suppression can set in even before a sunburn,” Dr. Baron said. Reference: http://www.nytimes.com/2009/05/14/fashion/14SKIN.html?pagewanted=all&_r=0

Remember, when you need us we are always in your corner!

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