You Should Know: The International Pemphigus and Pemphigoid Foundation by Kyle Patton, associate editor, Dentaltown magazine

At Dentaltown, we're lucky to meet people who do great things in the name of dentistry, and our recurring You Should Know feature introduces them to our readers. For this installment, we spoke to Marc Yale, the executive director of the International Pemphigus and Pemphigoid Foundation (IPPF). Yale, who was diagnosed with mucous membrane pemphigoid in 2007, also has served as a certified peer health coach for the IPPF for nearly a decade. His personal and professional experience makes him a knowledgeable and practical spokesperson for a foundation centered on finding a cure for pemphigoid and pemphigus and improving the quality of life for those affected by the disease.

Not every dentist is familiar with pemphigus and pemphigoid. Tell us about the diseases.
Pemphigus and pemphigoid are rare autoimmune diseases that result in blistering of mucous membranes and skin. They affect a very small percentage of the population, and neither is contagious or genetic. Pemphigus vulgaris, the most common of the pemphigus diseases, affects the skin and mucous membranes. Blistering may be accompanied by severe pain, itching, burning and stinging. If extensive, blistering can lead to life-threatening fluid loss, infection and disfigurement.

How are dentists in a unique position to help pemphigus and pemphigoid patients?
Because most pemphigus and pemphigoid patients experience oral symptoms first, they often see a dentist as one of their first clinician contacts. Dental professionals can recognize pemphigus and pemphigoid and reduce diagnostic delays. It currently takes a new pemphigus or pemphigoid patient an average of five doctors and 10 months to receive a correct diagnosis.

Dental professionals have the unique opportunity to shorten diagnosis times by recognizing the symptoms of the disease and referring patients to a dentist or dental specialist experienced in performing biopsies of vesiculobullous lesions. Dentists can reduce pemphigus and pemphigoid patients' uncertainty and anxiety by educating them about these diseases and reassuring them that effective treatments exist.

The IPPF is available to assist dentists and dental hygienists in their professional development through continuing education courses, and we encourage all dental professionals to introduce every patient with pemphigus and pemphigoid to the IPPF.

Tell readers about IPPF and what it provides.
The IPPF's most important objective is to provide patients and doctors worldwide with information about pemphigus and pemphigoid. We do this through patient support services, advocacy, education, promotion of research, and spreading awareness within the dental community. By raising awareness, we aim to increase dental provider recognition of pemphigus and pemphigoid, thereby decreasing diagnostic delays and improving patient outcomes. Our mission is to improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.

What's available to dentists who contact the foundation?
The IPPF provides educational resources for dental professionals, including videos, biopsy technique information, a gallery of clinical photos and a list of dental management tips. We offer professional CE courses to help reinforce recognition of the clinical presentation of the diseases and best practices for performing biopsies.

We also add dental professionals to our provider directory to assist patients in finding a dental practitioner who is experienced and knowledgeable in diagnosing or treating pemphigus and pemphigoid.

The foundation offers a special opportunity for dental students by sending patient educators to dental schools throughout the United States. Patients share their diagnosis stories with students to increase retention of information on pemphigus and pemphigoid and stress the importance of learning about rare diseases. We've presented at 15 dental schools across the country. Schools interested in a presentation can contact us.

Since the IPPF started in 1994, what has been the organization's biggest advancement or achievement?
The IPPF has provided thousands of patients and their caregivers the comfort and support they need to continue to live active, productive lives. To reduce diagnostic delays, the foundation has reached more than 11,000 dental professionals and students by presenting at dental schools, providing continuing education courses and exhibiting at dental conferences.

How can a practice begin working with you?
Visit our websites—putitonyourradar.org and pemphigus.org—to learn how to get involved. Contact us at awareness@pemphigus.org or 916-922-1298 for more information.