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.
Ellen Levine, IPPF Patient Educator, and Debra Teperman, IPPF Board of Directors. (Photo by Jeff Thiebauth Photography)
The IPPF is excited to announce that Ellen Levine, IPPF Patient Educator and pemphigus vulgaris (PV) patient, received the Harvard Medical School Dean’s Community Service Award for her work with the IPPF. The award identifies individuals whose dedication and commitment to community service have made an outstanding positive impact on the local and/or global community. The award includes a $1,000 donation to the IPPF.
Ellen lives in Boston and works for the Armenise-Harvard Foundation, a foundation at Harvard Medical School (HMS) that supports leading scientists at HMS and at institutions in Italy in the pursuit of scientific discovery in the field of medicine. As an IPPF Patient Educator with the Awareness Program, Ellen has traveled to various universities and professional exhibits to share her diagnosis story with dental students and professionals in order to accelerate pemphigus and pemphigoid (P/P) diagnosis times.
Upon receiving her award, Ellen acknowledged, “It wasn’t long ago that I wouldn’t disclose the nature of my disease with people who I didn’t know. I didn’t feel comfortable sharing the fact that I had a chronic illness, let alone such a rare one, and one with such a strange-sounding name. Now I realize how important it is to spread awareness and to do my part to make an impact. With this award, I hope to raise even more awareness of P/P among those in the HMS community and beyond.”
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?
Hello all! Working for the IPPF has been something I have been interested in doing for about five years, since my pemphigus vulgaris finally got under control. I knew from my first contact with the Foundation that this is an amazing group of people. I am proud of the way our community pulls together and rallies for each other; it’s amazing how we sincerely care about one another.
The position of Outreach Manager is new to me, as well as to the IPPF. This position was created to be a link between Patient Support and the Awareness Campaign. While these programs have different focuses, they are united by the common goals of education, early diagnosis, and promoting the best treatments for P/P patients.
As a result, half of my time will be spent supporting patients. If anybody touched by our diseases has a question, comment, or concern, I am their first point of contact. It is my responsibility to provide all who contact me with clear, precise information and resources. I will also be creating and revising material for print and online, as well as helping to facilitate local support groups, meetings, and patient education calls.
The other half of my job will be spent raising awareness of P/P in the medical community with the goal of reducing patient suffering and diagnostic delays. Currently, the Awareness Campaign focuses on dental outreach. I will be coordinating patient presentations at universities and looking to recruit, train, and supervise other patient speakers and volunteers. I will also take over coordinating exhibit booths at conferences for dentists and medical professionals. It is my goal to pass along what I’ve learned and use my knowledge to make a difference in the lives of P/P patients. And the IPPF has given me this wonderful opportunity to do so.” It sounds like a lot of work — and it is — but I am up for the challenge! Because of my status as a PV patient and my past work in the healthcare field, I feel that I am qualified to work with both communities simultaneously. I promise to work tirelessly to promote quality of life for the members of our community, as well as in the dental, medical, and nursing communities.
I know I would not be where I am today if it weren’t for the IPPF community. So many of you provided me with support, compassion, and encouragement during one of the lowest periods of my life. I was young when I was diagnosed. I was scared and felt isolated. But my IPPF friends changed all of that. I want to do that for others. It is my goal to pass along what I’ve learned and use my knowledge to make a difference in the lives of P/P patients. And the IPPF has given me this wonderful opportunity to do so.
Please know you can contact me by email at becky@pemphigus.org or by phone at (916) 992-1298 x105. I will work to get you the answers you need. I am here for you.
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 pemphig.us/pe-highlights.
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?
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.
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.
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.
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.
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.
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!
