Much of the early success of this program is due to the Patient Educators themselves: Becky Strong and Hannah Heinzig. Both nurses living with pemphigus vulgaris, Becky and Hannah are able to bridge the gap between educational knowledge of P/P and the personal connection of a patient’s experience.
The origin of the Patient Educator Program can be traced back to the 2010 IPPF Patient Conference in Philadelphia. Becky, whose search for a correct diagnosis spanned 17 months, five physicians, and several rounds of incorrect treatments, attended the conference as a newly diagnosed patient. She left inspired by Dr. David Sirois, who told patients that they had the opportunity to educate doctors. At her next appointment at the University of Michigan Department of Oral & Maxillofacial Surgery, Becky and her dentist discussed the idea of speaking to dental students about PV from a patient’s perspective. This discussion led to an invitation to speak to over 200 students at the University of Michigan. Becky wrote about her experience for the IPPF Quarterly, and the Patient Educator Program grew from there.
Hannah’s diagnosis journey included nine physicians, three years, and a misdiagnosis of leukemia. A new Patient Educator, she gave her first IPPF-sponsored lecture in March of this year. For Hannah, the lectures have been part of the healing process. “I could not wait to do something bigger than myself and help others in the process,” she said. “[The lectures] helped me to take that first step of the unknown and also regain control and normalcy.”
Becky expressed a similar sense of empowerment: “[It] feels great that little old me has the power to reach so many dentists . . . so I can help somebody else get a diagnosis and get treatment faster than I did.”
As nurses, Becky and Hannah had plenty of experience interacting with both healthcare professionals and the general public prior to becoming Patient Educators; however, addressing large classes of students and faculty was new. Hannah said she was terrified when IPPF Awareness Campaign Manager Kate Frantz asked her to share her story. “I never wanted to be a public speaker, and that is exactly what I am doing. I have to say it has been one of the most rewarding things I have ever done and, believe it or not, very addicting.”
“Speaking in public isn’t always easy,” Becky said, “but it is always worth sharing your story. You never know who you might inspire.”
Both Becky and Hannah have been surprised and encouraged by the emotional response to their presentations. “I was praying that I wouldn’t put them to sleep,” Hannah said. “Instead, I have looked into a room full of compassionate eyes and smiling and tearful faces while pouring out my own story.”
“It’s the emotional way that I tell the story that gets students to connect with me,” Becky said. “Many times, students cry and laugh during my lectures, and many have told my husband how brave we both are for sharing our story.”
The IPPF Awareness Campaign is lucky to have such inspired Patient Educators at the heart of the program. The overwhelmingly positive reactions from both students and faculty underscores the impact patients have in raising awareness about P/P.
“I want to encourage everyone to get involved,” Hannah said. “It truly helps you heal when you help others. It doesn’t have to be big or small. Find what makes you passionate . . . and incorporate it into helping spread awareness.”
Though the Patient Educator Program is one of the “big” ways to get involved, the IPPF also has opportunities that require less of a commitment. The Awareness Ambassador Program trains people to raise awareness in their own communities and can be tailored to fit individual skill sets and comfort levels. More information can be found on the Awareness Campaign website: pemphigus.org/awareness. ippf