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:

Ryan Stitt and Dr. Ricardo Padilla

On October 12, 2018, I participated in the IPPF Dental Day as part of the 2018 Patient Education Conference. Dental Day was hosted at the UNC Adams School of Dentistry by Drs. Donna Culton and Ricardo Padilla. As a dental student, I found this to be by far the most exciting and enriching experience of my dental school education to date.

Pemphigus and pemphigoid (P/P) patients traveled from different parts of the world to attend the conference. During the Dental Day event, dental and dental hygiene students were put into groups under the supervision of UNC faculty. We performed thorough extraoral (head and neck) and intraoral examinations on P/P patients. We discussed their diseases as they related to oral symptoms and oral care, and learned about the personal implications of living with P/P. Students provided patients with oral hygiene instructions and suggested products and techniques to aid in disease management. We also encouraged them to establish a dental home if they did not already have one.

As students, we learned about using the Nikolsky sign in the oral mucosa to aid in the diagnosis of P/P. In order to help dental students better understand P/P, patients allowed us to poke and prod their oral tissues. The initial examination gave us clues about the type of autoimmune disease that the patient might have, though definitive testing would still be required to confirm a diagnosis.

For me, one particular interview with a patient was impactful. She informed me that she lived in a town where access to medical care is limited. She explained that for the majority of her life, she had no idea what her disease was because pemphigus is such a rare disease, and she was delayed in being diagnosed. The conversation filled me with a feeling of purpose and provided an understanding of what it may be like to treat patients as a dentist specializing in oral disease diagnosis.

Dental Day facilitated a learning experience for both students and patients. For the students who participated, we were fortunate to perform clinical examinations on P/P patients. Patients were also given the opportunity to teach future healthcare providers about their autoimmune conditions. I believe that these types of extracurricular experiences make one’s dental school education truly amazing.

I want to acknowledge the hard work of the faculty and staff for hosting the event at our dental school. I cannot overemphasize what this wonderful experience has given me as a dental student. I am extremely grateful that I was able to meet so many P/P patients and learn firsthand about what it’s like to be afflicted with this type of autoimmune disease. I’d also like to thank the patients who participated and allowed us to learn more about their conditions. Since P/P are such rare and interesting diseases to study, I am hoping to attend the upcoming 2019 Patient Education Conference in Philadelphia in order to continue learning about the latest P/P information and disease management.

Ryan Stitt is a rising third-year dental student at the UNC Adams School of Dentistry. He enjoys treating patients in clinic and participating in group-based extracurricular activities. In his free time, Ryan designs and crafts zip lines at his home and practices playing the guitar.