Help patients connect with the resources they need to live—and thrive—with pemphigus and pemphigoid.
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.
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:
- Week 1: Halima’s Diagnosis
- Week 2: Rudy Takes Control
- Week 3: Mei Ling Pays It Forward
- Week 4: Kathleena Finds Strength as Both a Patient and a Doctor
- Week 5: Fred’s Perspective: Connecting with Other Patients
- Week 6: Toby’s Luck
- Week 7: Minatallah Finds Her Role as a Dental Student