“I Found My Wizard of Oz:” Patient Educator Shares Her Pemphigus Vulgaris Diagnostic Journey as Part of GSDM Rare Patient Seminar Series
The journey that Ellen Levine, a patient educator with the International Pemphigus & Pemphigoid Foundation (IPPF), took to find a specialist who could properly treat her mystery ailment made her feel like she was Dorothy, the famous heroine from The Wizard of Oz, desperately searching for her way back to Kansas.
Levine shared the details of that journey with GSDM faculty, staff, and students during a presentation on October 5 as part of the GSDM Rare Patient Seminar Series.
“I went to specialist after specialists, more than a few times, doctors and dental professionals would tell me ‘Wow, your condition is fascinating,’” Levine said. “And I’m thinking to myself ‘What is so fascinating about this disease? I call it terrifying…’ Like Dorothy in The Wizard of Oz, I felt trapped in a nightmare that wasn’t ending, trying to work my way through this endless maze of obstacles, medical appointments, and insurance issues.”
Levine was diagnosed with the rare autoimmune disorder pemphigus vulgaris 16 years ago. This is Levine’s third time speaking to the GSDM community in order to increase awareness about pemphigus and pemphigoid.
Dr. Yoshiyuki Mochida, GSDM clinical professor and IPPF Medical Advisory Council member, said Levine has been a valuable contributor to the Rare Patient Seminar Series.
“I intentionally repeat this occasion because at that time, probably if our [earlier] DMD class or AS class were still here, they would be in third year or fourth year now, and then they are busier with more common diseases by looking at the patients in Boston,” Mochida said. “As most of the cases they treat are common dental disease, they probably forget. But for students in first year and the second year, I would like to put some ‘watch list’ type of thing to their brain so that they remember better, and then carry over that type of knowledge to start of fourth year when they start seeing patients.”
In 2015, Mochida started developing the GSDM Rare Patient Seminar Series, with the vision of humanizing uncommon oral diseases by having real patients share their stories with the GSDM community. At the same time, IPPF reached out to the school, inquiring about hosting a Patient Educator Seminar.
Mochida ended up becoming the school’s primary liaison with the organization, leading to his eventual appointment as an official IPPF Medical Advisory Council member.
Mochida said dental professionals need to be informed about pemphigus and pemphigoid because about 80 percent of patients who develop the diseases will develop lesions in their mouth first, which places dentists in a unique position to be able to identify and diagnose this disease.
“Dentists tended to overlook [pemphigus] because mouth ulcers are so common due to burns, biting, eating acidic foods, etc.,” Mochida said. “No one thinks about it is a part of autoimmune disease, but it is sometimes. If the patient comes back and it’s still there or it has worsened, dentists have to think about Plan B.”
Levine said she was across the globe in Australia–far from her hometown of Boston–when she first noticed gum issues. She said it took visits to at least 11 healthcare providers to receive a proper pemphigus vulgaris diagnosis, leading her to return to Boston for treatment. After undergoing inappropriate and inadequate treatments and misdiagnoses, she finally felt at ease when a Boston-based dermatologist knew how best to treat her disease and understood her pain.
She said she hoped her presentation sparked interest in and awareness of autoimmune diseases and made it clear how important it is for dental professionals to be familiar and knowledgeable with these diseases.
“At that point, I knew I had encountered no ordinary practitioner, but a physician with a holistic perspective who incorporated mind, body, and spirit,” Levine said. “I felt like I finally found my Wizard of Oz.”