Focus on listening
Becky Strong, outreach director for IPPF
“I think that patients who have the courage to share their stories really make such a huge difference,” says Dr. Victoria Woo, director of pathology and the advanced education program in oral and maxillofacial pathology. She is a clinical professor in the Department of Diagnostic Sciences at Texas A&M College of Dentistry.
Woo teaches clinical principals of patient evaluation to third-year dental students. Her class recently learned firsthand about one patient’s struggles from Becky Strong, who serves as outreach director for the International Pemphigus and Pemphigoid Foundation. Strong spoke about living with pemphigus vulgaris and her journey toward diagnosis and finding support.
“Pemphigus is a rare autoimmune blistering disease, where my body thinks the cells that are holding my skin together are foreign and attack them,” Strong explained to the class. “My mom—from years of watching the show The Doctors—thinks that’s because I had mono in college or because I got weird vaccinations to do international medical missions. My aunt thinks it’s because my immune system is weak. Really, in all actuality, it’s just the opposite. My immune system is bored, and it’s making things up to fight against.”
Strong previously shared her story at the College of Dentistry in 2016. In short, she first noticed something was wrong in 2008. She experienced nosebleeds, water blisters in her mouth and, eventually, painful sores. Her condition grew worse, to the point that eating, talking, or even using an electric toothbrush was painful. It wasn’t until 2010 that she received a correct diagnosis.
“For the first time since I was going through everything, when she [the doctor] said, ‘Tell me what’s going on,’ I realized she was listening,” Strong says. “She wasn’t presupposing, she wasn’t computer charting, her back wasn’t to me. She was listening and taking notes. By the time I got to the end I was crying, so grateful that somebody was actually listening to me.”
Despite maintaining routine dental visits throughout her experience, Strong’s regular dentist did not recognize her pemphigus vulgaris for what it was. Strong wanted the students in her audience to remember that, after they graduate and begin practicing, they can play an important role in reducing delays in proper diagnosis. Listen, be compassionate, and keep the possibility of rare diseases in mind when searching for an answer, Strong told the students.
Woo says that class members came up to her following the guest lecture to talk about how they had felt for Strong and been moved by her story. The topic really resonated, Woo says, because the students are beginning to see patients themselves. She adds that this lecture was particularly well timed as her class was discussing oral lesions.
“This particular course is meant to apply that foundational knowledge to specific scenarios,” Woo says, adding that she hopes to bring in more guest speakers in the future. “The course is 90% case based; they apply the knowledge they learned in second year to scenarios in third year.”
IPPF’s website contains detailed information about pemphigus and pemphigoid for both patients and health care providers. In particular, Strong highlighted the “Biopsies Save Lives” page of the site, which provides diagnostic tools and questions to ask patients in assessing the need for a biopsy.
