Rebecca Oling and Dr. Cataldo Leone

It wasn’t easy getting to this meeting. After a four-hour train ride, I decided to walk to my hotel, nearly two miles away. It was rush hour, days after a major snowstorm. Boston was cold, and the streets were crowded with traffic barely visible beyond mounds of blackened snow. The walk was neither refreshing nor picturesque; it ended with a gauntlet of addicts outside the methadone clinic near my hotel. No sooner did I arrive in my hotel room when the phone rang. He was early, and I was spent. Everyone has a story.

There is a saying that one should never be too busy to meet someone new. Most of us are so harried or exhausted that we forget to hold a door, to let someone hop a grocery line, to stop for someone who seems lost. Or, these days, to even look up. Last month, during that post-snow Boston trip, I took a chance to set up a meeting with Cataldo Leone, DMD, the Dean for Academic Affairs and Professor of Periodontology and Molecular and Cell Biology at Boston University (BU).

It was immediately apparent that Dr. Leone was the type of person who takes the time to be kind. He was thoughtful and could not have been more accommodating, offering to pick me up directly at my hotel. From there, we headed to a favorite restaurant where he had much-needed business to conduct: confirming arrangements for his mother Carmella’s birthday brunch the following Sunday.

Students do show up—sometimes out of hunger and looking for free pizza—often with an intense curiosity at the opportunity to meet someone with a rare disease they might someday see in practice.

Dr. Leone was a catch of an interview, not only because he is such a busy person, but also because he has taken some of what the IPPF has provided in patient educator presentations and molded it to his needs at BU. As part of the IPPF Awareness Program, patient educators visit dental schools and talk to students in oral pathology courses about their diagnosis journeys. These presentations are paired with clinical disease information. The aim is to ensure that students recall what they have learned and understand the importance of early diagnosis from both a clinical and emotional perspective. But that isn’t quite how the story went at BU for the IPPF.

The IPPF has presented at BU twice in as many years. We have long asked for these experiences to be part of the curriculum, as a kind of requirement. Dr. Leone has felt that making it a requirement risks students coming with ulterior motives—namely, to get the credit. This past year, Dr. Leone acted on a visceral understanding that offering these “lunchtime learning opportunities” was memorable and effective enough that it was worth seeking out patients with other rare ailments. Students do show up—sometimes out of hunger and looking for free pizza—often with an intense curiosity at the opportunity to meet someone with a rare disease they might someday see in practice.

With this approach, Dr. Leone has created a kind of community of practice. It was not what we expected when the IPPF began the Patient Educator Program, but that’s the beauty of what Boston has done. Rather than turning away from the opportunity altogether, Dr. Leone worked closely with Kate Frantz, IPPF Awareness Program Manager, to ensure that BU’s participation aligned with the program’s guidelines. The IPPF’s Awareness Program can typically pay for the speakers’ travel and expenses if the school can meet an attendance requirement of 100 people. Because BU so valued the program, they offered to sponsor the IPPF’s visit. With approximately 80 students routinely attending the lunchtime presentations, it is clear from comments that students are actively learning lessons they will remember for years to come.

“We know each school is unique,” Frantz said. “Ultimately, what is most important is raising awareness of pemphigus and pemphigoid. Boston University is a terrific example of a school with a unique vision that is willing to work with us to make that vision a reality.”

About 10 to 15 percent of the BU School of Dental Medicine student body chooses this enrichment without enticements, according to Dr. Leone, further justifying the investment. Students take the time to show up. His eyes gleam as he admits he’d like to do more actual assessment of these programs. He’s also quick to point out that assessment is a tool to measure impact and that you can already feel that the “ball is rolling.” The patient educator approach is impactful precisely because it’s personal “when you interact with people. As people to people it is always better than one dimensional.”

Part of the multidimensional success of the BU School of Dental Medicine enrichment opportunities must be credited to Dr. Yoshiyuki Mochida. When he began to work at BU in 2009, Dr. Mochida’s interests were in rare diseases affecting craniofacial tissues. Mostly, he had been working on Dentinogenesis Imperfecta (a rare, inherited disorder in which the teeth are discolored, often translucent, and break easily). He was contacted by the boyfriend of a woman with the disease who must have seen his name associated with the research on the subject. The woman’s daughter also suffered with the same disease. Dr. Mochida helped by setting them up as patients in BU’s clinic. In 2015, a second family contacted him. This time, it was to get help advocating with an insurance company (Dentinogenesis Imperfecta is not covered in Massachusetts because it is considered a congenital dental issue. It is only covered in one state—New York). The problems patients faced became Dr. Mochida’s problems, and this led him from research to action. In that same year, the IPPF sent Becky Strong to BU as a patient educator, and the pair met.

Awareness is situational. It is about context. It is about the scene and the story.

“It struck me that this could be a series,” Dr. Mochida said. It could only benefit dental students to understand these complex awareness and advocacy issues as they embark on their professional careers. Perhaps P/P, like Dentinogenesis Imperfecta, are inherited, impacting the patient’s concerns about having a child. Maybe pemphigus and pemphigoid are not daily encounters in clinical practice, but clinicians will see these or similar diseases—with all their symptoms and accompanying complications. Dr. Mochida felt it was imperative to make this clear to his students. “I was already sparked on the rare disease path and the patient needs,” he explained, “but students might not be thinking about all those factors that affect a patient’s ultimate success.”

Dr. Mochida approached Dr. Leone with the idea about an enrichment series. He then contacted the National Organization for Rare Disorders (NORD) to find more patient speakers. NORD referred Dr. Mochida to the IPPF. Though clinicians have often used actual patients as models of one issue or another, the idea of partnering with patients as educators—true experts in their own experiences and diagnostic pathways—is an exciting and new development. According to Mary Dunkle, Vice President for Educational Initiatives at NORD, the IPPF’s program is an “excellent service” that is “absolutely innovative.”

In fact, NORD began to see the value of such a service three years ago when it sent a contingent of patients to the annual American Medical Student Association conference. Dunkle was hooked. “I was struck by the number of students who told us there, or who wrote to me afterwards, that they would ‘remember this for the rest of my life.’” It’s an effective way to train the whole clinician: remind them that patients are people, each with a unique disease story.

For the IPPF, partners like NORD can help to get patient stories across to a wider audience, while also paving the way for other patients to share their experiences. Though NORD’s program is newer than the IPPF’s, the “demand is there,” Dunkle affirms. “We often get requests for various community events—not necessarily in the classroom.” This is an important distinction from the IPPF’s focus on curricular ties. However it happens, the stories “go with these students the rest of their lives.”

There are myriad ways of communicating patient stories, especially when shared opportunities make sense for an organization and its patients. As a patient and former board director, what matters most to me is that there are passionate people who aren’t afraid to tell their stories with a clear goal in mind, even if it doesn’t begin the way we envisioned. Awareness is situational. It is about context. It is about the scene and the story. And while we can never be “too busy to meet someone new,” we should also never be so myopic as to ignore the opportunities that life presents when our stories come together. What is your story? How might being open to it, learning to tell it, and understanding how it intersects with others change the status quo?

Dr. David Sirois and Becky Strong presenting at NYU.

By sharing their stories with students at dental schools across the United States, the IPPF Awareness Campaign’s Patient Educators aim to increase retention of pemphigus vulgaris (PV) and mucous membrane pemphigoid (MMP) curriculum. Each lecture consists of a short clinical video on PV/MMP followed by a Patient Educator presentation and Q&A session, combining clinical information with the emotional appeal of a real patient’s struggle with delayed diagnosis.

Since Becky Strong gave the first IPPF Patient Educator presentation at the University of Michigan in March of 2014, she and Hannah Heinzig have presented to a combined 1,705 students, faculty, and staff at 12 schools. Steady requests for future presentations put the Awareness Campaign on track to surpass its goal of visiting at least 19 dental schools by the end of 2016.

To see Becky and Hannah in action, check out the new Patient Educator highlight video at

As a Patient Educator for the IPPF, I have the fantastic opportunity to travel around the country to different dental schools and give lectures on my journey with pemphigus vulgaris (PV). It’s an empowering experience to have a hundred people listen to my story at once. But it’s also important that the audience relates to me. I’m a person, not just a patient. I have to be open and honest about my journey. The audience must relate to the pain, suffering, sense of humor, and all the ups and downs of having PV in order to form a powerful memory. But how does this happen? How do I find unique ways to raise awareness not only in the classroom, but also on the trip to and from the university?

  1. Appearance matters – We’ve all heard our mothers tell us to put on clean underwear before leaving the house, right? This is no different. Looking tidy helps provide credibility. It also helps you to look engaging. Plus, the more you enjoy life, the more others will want to be around you.
  2. Don’t forget the Orange Sunglasses – The orange #healourskin sunglasses are a huge attention grabber. I wear mine EVERYWHERE! I keep them in the car, hang them from my collar, and wear them on top of my head. I wear them on vacation and around town. Many people have stopped me and asked, “What’s with the orange glasses?” It’s important to have a brief, but open answer to this question. Mine is, “You know the pink ribbons for breast cancer? Well, I have a rare autoimmune disease, and these are part of the campaign to raise awareness.” People usually follow up with, “What’s it called?” The conversation takes off from there. I also travel with a couple of extra pairs to give to people I meet along the way, and this leads to others inquiring about the glasses and PV.
  3. HI! – It’s the single, most important thing an advocate can say. It’s the door that opens communication with another person, group, or audience. It’s not intimidating for the listener, and most everybody smiles when they say it. Don’t forget to make eye contact, too.
  4. Be engaging – It’s important to not only talk, but also to listen. I don’t usually start off by talking about PV. Rather, I talk about the long line, the beautiful weather, or even a great piece of jewelry that somebody is wearing. Be aware of how people respond to you. While you may want to tell your life story, it can be overwhelming for some. Listen to their questions, and answer them honestly without over-sharing.
  5. Be Brave – This tactic works the same in the grocery store or at the park as it does on an airplane or at a university. Tell somebody about the glasses and ask if you can take their picture to use as part of the Awareness Campaign. When I fly, I usually ask the flight attendants to take a picture with the glasses. I explain that I’m traveling to lecture at a university and the glasses are part of the Awareness Campaign. What’s the worst that will happen? They’ll say no. In that case, I’ll smile, thank them kindly, and take my seat. I’ll probably never see them again anyway. But if they say yes, it opens a whole dialog. Sometimes, they even ask the pilots if I can take their picture once we’ve landed. I ask the same thing of the professors who invite me into their class. The Profs know I’m part of the Awareness Campaign and are usually happy to oblige. Once one person does it, others inquire about what’s going on. Each inquiry is an opportunity to spread awareness.
  6. Selfie-sticks – Ok, so maybe approaching others isn’t your thing. But I bet you’ve taken a selfie. Take your picture wearing the orange sunglasses while reading The Quarterly, petting the dog, holding a new baby, or with your best friend. Just don’t forget to post the pic with #healourskin!

There are opportunities to spread awareness everywhere. It just takes a moment to recognize and act on them.

There are also hundreds of other ways to be an advocate that I haven’t even thought of yet. That’s where you come in. Take my suggestions and run. I hope I’ve given you ideas of what you can do to help the IPPF spread the word. Put your unique spin on the Awareness Campaign. Please don’t forget to share your pictures – tag the IPPF and use the hash tag #healourskin. I can’t wait to see what you come up with!