It was January 2007, and I was sitting across the desk from the second dermatologist I had seen in five months. For the second time, I was told that my condition was probably “seborrheic something-or-other” and was prescribed an alcohol-based topical steroid that I knew would be painful to apply. I had endured three months of increasingly widespread lesions on my scalp and back, but hadn’t associated those with the bad mouth sores and sloughing of my gums that started the previous summer.
The following week, I was scheduled for a tooth cleaning that I’d put off because I was afraid it would hurt. The poor dental hygienist probably never had performed such a bloody cleaning. When the dentist inspected my mouth, he immediately scheduled me for a biopsy. The result came back positive for pemphigus vulgaris (PV). Lucky me.
Actually, I was lucky—I lived within a short train ride of Manhattan and Langone Health at New York University (NYU), which meant I had access to medical professionals with extensive experience with PV. Even luckier, in early March of 2007 I came under the care of Dr. Jean-Claude Bystryn, one of the world’s premier pemphigus experts. Dr. Bystryn treated me until shortly before his death in 2010.
I was diagnosed with PV, was the patient of a top medical professional, had begun to manage my disease with corticosteroids, and had an extraordinarily supportive caregiver in my wife. I wasn’t even aware at the time that I was missing a crucial part of what I needed in my battle with my disease: I didn’t have the slightest clue about how to live with PV day-to-day.
That’s when the IPPF came into the picture. Much of my career was spent associated in one way or another with the medical profession, which has perhaps made locating and comprehending detailed information about causes, treatments, side effects, insurance issues, etc., a bit easier for me than for some patients. My internet searches had turned up a ton of technical information and research papers about autoimmune blistering diseases, but not much about what it’s like to work, play, travel, or simply get out to a decent restaurant while dealing with stares and questions (and some well-intended but really bad advice) from friends and strangers. I felt alone. I knew there must be others out there who were struggling like I was, but until I found the IPPF website, I didn’t know how to connect with them. From my first tentative emails with Mei Ling Moore and Marc Yale, I knew: there were people who understood.
Of course, the IPPF website itself contains much information about the various forms of pemphigus and pemphigoid (P/P) as well as the services the IPPF provides. However, it has been the interaction with fellow patients through the peer health coaches, support groups, and the annual Patient Education Conferences, that have proven the most valuable to me. My work schedule kept me from attending a Patient Education Conference until 2014, when I traveled to Chicago and was able to meet so many people I had already encountered either through the IPPF website or various social media outlets. It was in Chicago that I learned of the potential of rituximab as a treatment option and attended meetings on topics such as relaxation techniques, dietary considerations, and the Awareness Ambassador Program (the outreach effort the IPPF put together to reduce the time gap between first symptoms and diagnosis). Just spending time with people who knew exactly what I was going through, who knew the instantaneous fear and rage that goes along with each new lesion, who were discovering how to find the shady spots at high noon, was an amazing comfort.
In Chicago, I not only signed on to help with the Awareness Program, but I also joined the Patient Registry, which has now been succeeded by the Natural History Study. Since then, I’ve attended Patient Education Conferences in New York (including a very chilly Mets-Yankees game!), Newport Beach, and Durham (where I re-established old friendships and met newer members of the P/P community). I’ve also met with members of my local support group; volunteered to help staff the IPPF booth at the Greater New York Dental Meeting in 2017 and 2018; provided P/P information to dozens of local dentists; and most recently advocated for the IPPF and supported legislation as part of Rare Disease Week on Capitol Hill.
I’m not writing all this to tell you what a good guy and solid citizen I am. I’m not a “joiner” by nature, and it surprises me that I’ve become involved as much as I have. The IPPF has provided such a solid foundation of support, both practical and intangible, to me over the years that I truly feel a part of the family. That’s what has instilled in me the impulse to roll up my sleeves and help out.
My PV has been in remission (no flares and no medication) for more than three years, but the IPPF continues to be an important part of my life. The Patient Education Series webinars help keep me up-to-date, and I look forward to each new issue of the Quarterly. I have already set aside time for the Patient Education Conference in Philadelphia this October.
Dealing with this ugly group of diseases is nothing any of us would have chosen. Make no mistake: I wish there wasn’t a need for this organization. I wish it had never been necessary to meet the patients, caregivers, and staff I’ve come to love and admire and whose friendship and commitment mean so much to me. But I am grateful every single day for having the opportunity to share this journey with them.