Since being diagnosed with PV in December 2010, I’d been under the care of a terrific dermatologist. While the initial diagnosis had scared me, I’d read enough on the Internet to feel sufficiently informed. I’m a writer, not a scientist, and, frankly, all that stuff about proteins and B cells scrambled my brain. Did I really need to understand what was happening in my body? My doctor did, and that was good enough.
All I wanted was to go about my life without those nasty sores. So I took my medicine, went for labs, and waited for my condition to clear up.
Only it didn’t clear up.
I flared – badly. Clearly there was more going on than I realized. It was time to accept the fact that I had a chronic disease, one that was still in the early stages of being unraveled by scientists. If I was going to learn how to live with pemphigus over the long haul, I needed the standard tools:
• basic knowledge about the immune system to communicate with my doctor better
• a connection to the medical community to begin to grasp what researchers already know and where current research is headed
• shared experiences with others to better understand how diet, sleep, and stress affect me
• a community for ongoing support
The announcement about the meeting in Boston promised all that so I signed myself up. My daughter, Zoe, accompanied me. With a background of science, Zoe not only was great company and support but translated the molecular biology stuff. Handy!
As we checked in for the weekend, we were warmly welcomed by IPPF staff. Friday’s evening reception was a cozy mingling of patients, family members, and doctors in a setting suited to making new friends and getting to know some of the weekend presenters close up in a casual environment.
Saturday’s workshops covered the gamut of topics related to pemphigus and pemphigoid, their diagnoses and the choices doctors make when prescribing treatment regimes. My favorite talk was the one led by pioneer Dr. Sam Moschella on “Pemphigus Before Prednisone.” He described corn starch baths and treatment with an arsenic derivative called carbosone. Listening to him, the gravity and complexity of the disease hit home.
There was a lot of talk about rituximab, a B-cell targeting drug that has signified a real change in pemphigus treatment. This was particularly relevant to me, as I had just undergone Rituxan™ therapy. In one of the smaller breakout groups, I learned about Dr. Animesh Sinha’s work in genetics. In another, Dr. Vikki Noonan, a dentist, gave us great tips on oral hygiene.
One of the best parts of the weekend was making new friends. Zoe and I sat with a woman from Canada and her daughter at the Saturday night gala dinner and had a wonderful time sharing our lives and many laughs.
Oh, and the delicious food and the generosity of the event sponsors was beyond compare!
What good can a weekend with the IPPF do? It can educate, entertain, and inspire. It can bring to life the truth of the IPPF motto, “A common hope, an uncommon bond”. In short, a weekend can do lots of good!
I will be back again this year in San Francisco. I hope to see you there.