Welcome to our “Inspiring Hope” series. For the next several weeks, we’ll share patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. Our third story comes from Hannah Yale in California.

Empowerment through Community

I was four years old when my dad got sick the first time. For six months he was undiagnosed, and during that time he went blind in his left eye. When he was finally diagnosed with mucous membrane pemphigoid (MMP), my dad got in touch with the IPPF. The IPPF helped him get in touch with other patients who were experiencing, or had already experienced, diagnosis and treatment. The Foundation also gave him a list of doctors who knew how to treat pemphigus and pemphigoid (P/P) to ensure that he received the care he needed. I went to the hospital with my dad every day for his rituximab and IVIG treatments.

In 2008, the IPPF held its annual Patient Education Conference in Dallas, Texas. I went with my mom and dad to meet other patients and families who had been affected by P/P. At the conference, we found a community. My entire family has been involved with the IPPF in some form ever since.

After my dad connected with other pemphigus and pemphigoid patients, he began sharing his own experiences with diagnosis, treatment, and dealing with the effects of his disease. When the IPPF created the Peer Health Coach program in 2018, my dad became one of the first coaches. Just as I was entering high school in 2016, he became the executive director. Around the same time, he had a relapse of his MMP, but was able to recover quickly with rituximab treatment.

Empowerment Through Community

I have often felt powerless when my dad has been sick. Three years ago though, I learned that I am not powerless to help him. In 2017, my dad took me to Rare Disease Week on Capitol Hill, an event organized by Rare Disease Legislative Advocates. We attended with a group of patients, caregivers, and doctors representing the IPPF, and our goal was to speak to members of Congress about legislation that would benefit people with all types of rare diseases. I was able to meet so many wonderful people who shared my feelings and experiences. Going to Rare Disease Week made me realize that even as a teenager, I could make a positive impact.

I now know that I can help people just like my dad always has, and that I am passionate about nonprofit work. I am proud to be able to represent the IPPF through my advocacy for accessible care and treatments. I know that my relationship with the IPPF will continue to grow as I do. The IPPF’s generous staff, compassionate volunteers, and inspiring programs have supported me throughout my life, and they have helped shape who I am today.

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Hannah is a 17-year-old California resident and a human rights activist. She is a member of the Young Adult Representatives of RDLA and has attended Rare Disease Week on Capitol Hill every year since 2017. Hannah is a first-year student at St. Mary’s College of Maryland, double-majoring in Public Policy Studies and English.

This article first appeared on the Undiagnosed Diseases Network (UDN). The UDN is a research study that is funded by the National Institutes of Health Common Fund . Its purpose is to bring together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies. The Coordinating Center of the UDN is based at the Department of Biomedical Informatics at Harvard Medical School. For more information on the Undiagnosed Disease Network, visit

Pemphigus and pemphigoid (P/P) are rare, autoimmune blistering diseases that affect the skin and mucous membranes, causing lesions that do not heal. Like many suffering from a rare disorder, the diagnostic journey for a P/P patient is complicated and stressful. On average, this journey involves five different doctors over a period of ten months before a patient receives a correct diagnosis. (Source: ) Once a correct diagnosis is received, P/P patients begin the long process of managing disease activity. There is no cure for P/P. Many patients are able to achieve a state of remission; however, insurance regulations make it difficult for some patients to receive the most effective treatments.

Sharon Williamson’s journey to a pemphigoid diagnosis started in July of 2014 when her mouth began to bleed whenever she brushed her teeth. Like many undiagnosed P/P patients, Sharon first shared her symptoms with her dentist. This dentist did not recognize Sharon’s symptoms and told her to floss more frequently.

The next doctor Sharon saw was an ear, nose, and throat (ENT) specialist. The ENT doctor thought her bleeding was a reaction to Plaquenil, which Sharon was taking to combat her rheumatoid arthritis. The ENT doctor put her on a mouthwash containing lidocaine. This numbed her mouth, but did not help the bleeding.

Sharon then saw her rheumatologist. She had been wondering if her bleeding gums and cheeks could be symptoms of Sjogren’s disease, which often affects arthritis patients. The test for Sjogren’s came back negative.

By December of 2014, Sharon was spitting bloody tissue whenever she brushed her teeth. “It hurt so bad that all I could do was hang over the sink and cry … spitting out blood the entire time,” she said. “No toothpaste was mild enough. No toothbrush was soft enough.”

From January to May of 2015, Sharon had more appointments with other doctors: an optometrist, who saw nothing wrong with her eyes, though Sharon would soon experience ocular burning; a dermatologist, who didn’t recognize her symptoms; and her primary care physician, who had no suggestions. “I felt as though my face was melting off,” she said.

After researching gum disease specialists, Sharon saw Dr. Jarrett Manning in Smyrna, GA, who recognized her symptoms as pemphigoid. Dr. Manning referred Sharon to Dr. Ronald Feldman, a dermatologist specializing in autoimmune diseases at Emory University. After biopsies and blood tests, Dr. Feldman diagnosed Sharon with mucous membrane pemphigoid (MMP)—a form of pemphigoid characterized by blistering lesions that primarily affects the various mucous membranes of the body, as well as the skin. Soon after, an eye specialist confirmed ocular involvement, which could lead to blindness. This was September of 2015, 14 months after Sharon’s initial symptoms.

Though Sharon found a doctor who was able to diagnose and treat her MMP, she has not yet achieved remission.

“I feel hopeless and fear the possibility of going blind,” Sharon said. “The pain from all of my conditions drains the energy from my body, making it hard to work. I go home, put warm compresses on my eyes, and lie in darkness for two hours. Eventually, I can get up and see my husband for a couple of hours before I go back to bed. Without the additional rest, I cannot do my job. I know that eventually, I will have to go on disability.”

Some emerging treatments, like intravenous administration of rituximab, have not been approved by the FDA for pemphigus and pemphigoid. This makes it difficult or impossible for patients to get approval for such treatments from medical insurance companies.

For Sharon, this has meant playing an anxious waiting game in hope that these treatments will be approved before her disease progresses even further. In fact, it was only during the writing of this post—in April of 2016—that Sharon’s infusions were finally approved by her insurance company after three previous denials and a call to her insurance commissioner.

“It’s sad that you can lose your livelihood, your sight, and maybe even your life, because of delays in… getting a diagnosis and treatment,” Sharon said.

While you are seeing a qualified dermatologist who is treating you for your Pemphigus Vulgaris, Bullous Pemphigoid, Pemphigus Foliaceus, Mucous Membrane Pemphigoid, etc. you might also be seeing your own dentist, OB/GYN, internist, ophthalmologist or ear/nose/throat specialist.

Please be sure that all of your doctors are aware of your condition and that they have access to your dermatologist.  It is important that they know the medications and dosage that you are taking for each medication.

All of your doctors need to be able to communicate with one another if necessary.  Being left in the dark will leave you at a disadvantage.  Also, if you are going to be scheduled for any major dental work, advise your dermatologist.  Depending on the procedure, your medications may be adjusted for a few days prior and a few days following to prevent any flare-ups.

Remember when you need us we are in your corner!