Inspiring Hope: Ellen’s Story

Welcome to our “Inspiring Hope” series. For the next several weeks, we’ll share patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. Our second story comes from Ellen Levine in Boston, Massachussetts, USA.

Ellen Levine is from Boston. She works at a foundation that supports leading scientists at Harvard Medical School and at institutions in Italy in the pursuit of scientific discovery in the field of medicine. She was the recipient of Harvard Medical School’s 2019 Dean’s Community Service Staff Award for her work with the IPPF.

During the months that led up to my pemphigus diagnosis in 2007, the range of emotions I felt were not unusual. My emotions were very similar to those patients before me who had also experienced the uncertainty and confusion that arises when debilitating and painful symptoms mysteriously appear out of the blue.

I was filled with an overwhelming fear of the unknown and had so many questions. What was wrong with my mouth, why weren’t these painful erosions healing, why were my gums bleeding, and what were these raw, scaly lesions on my scalp? 

My quest to find a specialist who could diagnose and treat this miserable condition felt like a never-ending nightmare. Awash in anxiety, I worked my way through an endless maze of obstacles, medical appointments, and insurance entanglements. I felt like Dorothy, frightened, following the yellow brick road in search of the Wizard of Oz.

The one thing that provided me with a sense of security and stability during that tumultuous time was the IPPF. Knowing that an organization like the IPPF existed was a dramatic turning point for me. Knowing I wasn’t alone in navigating a rare and persistent chronic illness gave me hope.

My initial involvement with the IPPF was as an active participant in the former email listserv group. Back in the day, before the creation of an IPPF Facebook page, an old-fashioned listserv was how pemphigus and pemphigoid (P/P) patients communicated regularly with one other. Each day, I looked forward to emails popping up in my inbox from people around the world who were also affected by these rare illnesses. People asked questions and gave advice while interjecting humor, understanding, and compassion in their correspondence. I made new friends who helped alleviate my fears and answered my questions. Facilitated by the IPPF, I learned so much from this community in those early days.

I was also fortunate to have consulted with Janet Segall, the founder of the IPPF and a peer health coach, who also answered my many questions while offering comfort and support.

Over the years, I’ve attended two IPPF Patient Education Conferences and have volunteered for the IPPF in multiple roles as a patient educator, awareness ambassador, Boston Support Group leader, and booth leader at the annual Yankee Dental Congress in Boston.

The IPPF lives up to its mission by improving the quality of life for all people affected by P/P through early diagnosis and support. And it’s my fervent hope that the IPPF’s vision of finding a cure comes to fruition. However, the IPPF can’t do any of this without help. The IPPF gives to us, and we should give to the IPPF in whatever capacity we can. Whether through volunteering or financial giving, we too, can make an impact.   

Thanks to modern medicine, great physicians, and the IPPF, I’ve learned to live confidently and successfully with a rare and chronic condition. Because of the IPPF, I don’t feel alone with my disease. I encourage anyone who has been diagnosed with—or suspects they may have—pemphigus or pemphigoid to connect with the IPPF, which has grown in leaps and bounds since my diagnosis in 2007. You will be in the best of hands.

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