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

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Our seventh story in the Patient Journey Series comes from Minatallah, a dental student at Virginia Commonwealth University. She had this to say after attending an IPPF Patient Educator lecture:

When applying to dental school, my initial feelings about dentistry centered on a yearning to help others. Our prerequisite courses required us to be involved within the community and provide for those in need of dental care. This helped open our eyes about what dentistry entails. However, I’ve learned that I can never say, “I’ve seen everything,” no matter how much I see. 

Upon starting dental school at Virginia Commonwealth University (VCU), we were welcomed with an abundance of plastic teeth. We drilled into mannequins some mornings, carved teeth out of wax some afternoons, and figured out ways to learn everything we needed to know about teeth and the human body. Our initial feelings about dentistry were diluted, and most of the information we learned was a memorization race for an upcoming test.

My first year of dental school finished up this year with a summer pathology class. My classmates and I were counting down the days until the end of the year. It felt like the life had been taken out of the field as we had gotten so comfortable with our mannequins and PowerPoints—until Becky Strong stood before our class. 

As Becky told her story about her battle with pemphigus vulgaris (PV), students became more alert than their normal, relaxed body language during lectures. I heard a few gasps and saw concerned glances being exchanged between students. It was like watching a thriller movie, but this was so real. It was clear we weren’t expecting to come in contact with anyone that described symptoms from our slides this early on. Moreover, we were under the impression that dentists don’t actually play a role in these stories, we just refer them to a physician, right? Wrong. 

As she told her story about the numerous times she went to the dentist, we kept hoping that they decided to take a biopsy of the unusual oral findings—much like a thriller movie audience chanting for a character not to go into a room where the killer is. We were on edge, hoping for a relieving segment of the story. However, when she mentioned that her disease had gotten so severe that her bottom lip came off on her spoon, we sunk in our seats. 

Reading through my notes that night felt different. Bullet points floated from my page and formed constant flashbacks to Becky’s PV story, and for the first time in a while, I had the same feelings I did before starting dental school. In the past, I’ve paid extra attention to information about the autoimmune disease lupus because my mother was the face of it. I found myself feeling the same way about PV because now that had a face too. I value the importance of attaching emotion to diseases by reading about people who suffered from them with the hope that in the future it would trigger my memory as a dentist and lead me to take immediate action during my practice. As our class took our final exam, I can guarantee every student that heard Becky’s presentation read the pemphigus questions and knew the correct answers.  

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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:

The Sy Syms Foundation has awarded a $100,000 grant to the International Pemphigus & Pemphigoid Foundation (IPPF) in support of the IPPF’s Biopsies Save Lives Campaign. This will be the seventh consecutive year the Sy Syms Foundation has supported the Awareness Program.

Since developing the Awareness Campaign in 2013, the IPPF has reached thousands of dental professionals and students. Due to its continued growth and impact, the Awareness Campaign transitioned into a permanent Awareness Program in 2017. This year the IPPF Awareness Program launched a media and marketing campaign that stresses the importance of a biopsy when diagnosing pemphigus and pemphigoid (P/P).

The new campaign centers on a single take-away for dental professionals: “Biopsies Save Lives— 4 questions to ask your patient to determine if a P/P biopsy should be considered.” A new information card was created to help dental professionals both recognize the symptoms of P/P and emphasize the importance of a biopsy. The campaign’s focus includes spreading awareness by exhibiting at dental conferences, emailing dentists throughout the country, reaching out to local dental societies, presenting at dental schools, increasing visitors to the website, and training Awareness Ambassadors to reach local dentists.

“We are incredibly grateful for the continued support of the Sy Syms Foundation,” said Kate Frantz, IPPF Awareness Program Director. “This is a pivotal year for the Awareness Program. We’ve launched our Biopsies Save Lives campaign, which includes new resources for dentists, an increased focus on marketing and communications, and enhanced methods for getting our messages out faster to even more dentists. We cannot thank the Sy Syms Foundation enough for their support in our efforts to accelerate pemphigus and pemphigoid diagnosis times.”

The Sy Syms Foundation was established in 1985 by retail entrepreneur and humanitarian, Sy Syms. His mission was to support education, and through his generosity the non-profit Foundation has affected the continued growth of many institutions of higher learning, medical research, and civic and cultural bodies. For more information on the Sy Syms Foundation, visit sysymsfoundation.org or call (201) 849-4417.

In January 2013 my husband was diagnosed with prostate cancer. Thankfully, after surgery he was cancer free.

But in May 2015 our whole world seemed to turn upside down when he came home with a very unusual sore in his mouth. Fearing the cancer had returned, Tony went to our family doctor and was immediately sent to an oral surgeon for a biopsy. He had the results within days, but the outbreak spread like wildfire. By the following week, it had reached his entire mouth, sinus cavities, and throat. He was in severe pain, he couldn’t eat or drink and could barely speak.

The drive home that day was silent, both of us trying to stay calm and remember what the doctor had said. When we arrived home, we both went directly to the computer to research PV — which was the wrong thing to do.

While sitting in the oral surgeon’s office for what seemed like an eternity waiting for the results, the doctor assured us it wasn’t cancer, but instead told us Tony had pemphigus vulgaris. It was something we had never heard of and the doctor wasn’t that familiar with it either. He quickly explained to us what he knew about the disease and referred Tony to a dermatologist.

The drive home that day was silent, both of us trying to stay calm and remember what the doctor had said. When we arrived home, we both went directly to the computer to research PV — which was the wrong thing to do. Thankfully, the dermatologist, who was familiar with PV, was able to see him quickly.

Needing to understand this disease, I searched the internet for a support group and stumbled upon a video of Becky Strong. After a bad experience with someone claiming to be a PV support group, I researched more about the IPPF and finally reached out to Becky. We met for coffee and it was our first connection with a patient – someone who understood – someone who had been through the same pain and treatment – finally, someone who connected with Tony. That talk with Becky gave Tony the confidence to contact peer health coach Jack Sherman, who gave him the support he needed when he needed it the most. We can’t thank Jack enough. Our Austin, TX visit for the IPPF Patient Conference was priceless. How can you put a price on finding someone with the same rare disease, let alone an entire room of patients willing to share their stories and assure you there is hope?

Unfortunately after 21 months of a combination of prednisone and Cellcept, the treatment wasn’t enough to control Tony’s disease. He is now seeing a specialist at University of Illinois at Chicago and has been recommended for IVIg and Rituxan treatment. He has completed all of his pre-testing and is awaiting insurance clearance and a start date. These treatments are very expensive so the family is hosting a benefit to help cover some of the medical costs. IPPF has been generous in supplying us with materials to help educate everyone and we hope to spread awareness of this crazy, confusing disease.

Many individuals with pemphigus and pemphigoid (P/P) present with chronic mouth sores, often well before lesions appear on the skin or other parts of the body. These painful mouth sores tend to be persistent and present as red, ulcerated areas. In some cases — especially those with mucous membrane pemphigoid — lesions may predominantly involve the gum tissue. However, most people with P/P suffer lesions in multiple areas of the mouth, including the tongue, cheeks (buccal mucosa), wet surface of the lips, floor of the mouth, hard and soft palate, and throat.

Oral lesions are often subtle, especially in early stages of P/P. As a result, P/P are often misdiagnosed by both medical and dental practitioners as thrush, food or toothpaste “allergies,” poor oral hygiene, viral infections, or erosive lichen planus. Many patients with P/P are first treated on an empirical basis (treatment based on observation and experience without a definitive diagnosis), often with multiple medications, until one approach offers some relief. The relative rarity of these conditions mean they are often not on a medical or dental practitioner’s “radar” when assessing a patient’s oral lesions.

So if you suffer oral lesions, how can you partner with your dental health care provider to come up with a definitive diagnosis? A thorough review of your symptoms is critical. Make sure your dentist or dental hygienist listens carefully and asks detailed questions about your concerns, such as:

  • How long have you had lesions?
  • What areas are involved?
  • Do you have any skin, eye, vaginal, or rectal involvement
  • What do the lesions look and feel like?
  • Do the lesions move?
  • Does your pain level and disease activity vary over time?
  • Do you currently have any active lesions?

Biopsy confirmed early gingival and mucosal lesions of mucous membrane pemphigoid. These lesions were managed as “non-specific gingival irritation, suspect allergy” for several months prior to a diagnostic biopsy being obtained.

The saying “diagnosis dictates treatment” is particularly relevant when it comes to treating oral ulcerative conditions.”

While early disease symptoms can be subtle, most of the conditions for which P/P are misdiagnosed are not typically chronic (with the possible exception of erosive oral lichen planus or chronic ulcerative stomatitis). Moreover, at least to a clinician with experience diagnosing and managing these conditions, the clinical appearance is quite distinct — toothpaste allergies and poor oral hygiene do not lead to widespread, chronic oral ulcers!

The saying “diagnosis dictates treatment” is particularly relevant when it comes to treating oral ulcerative conditions. Therefore, the best advice I can offer is threefold:

  1. Your dentist or physician needs to take your complaint seriously and needs to thoroughly investigate your symptoms.
  2. A diagnostic tissue biopsy is essential before your dentist or physician treats you empirically with antifungal, anti-viral, or corticosteroid medication.
  3. If the clinician assessing you does not insist on performing a diagnostic biopsy, insist on being referred to a clinician with extensive experience in the diagnosis and management of oral lesions (e.g an oral and maxillofacial pathologist, periodontist, oral and maxillofacial surgeon, or dermatologist).
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