Finding Hope and New Beginnings

Janet Segall

When I was diagnosed with pemphigus vulgaris (PV), I didn’t know anything about the disease or how I was going to deal with it. At 36 years old, I had plans other than having a rare disease diagnosis. It seemed untenable for me to learn to navigate my life with PV and as a single parent.

Hope felt like something hard to come by. No one really understood what I was dealing with emotionally. My family was sympathetic and helpful in many ways, but the first few years of dealing with this alone were daunting for me. There was no internet at that time, so information about PV was scarce. However, I found some stability on 30 mg of prednisone and the lesions went away, so my doctor and I figured out how to live by taking daily prednisone since that was the only choice. We learned that even reducing the prednisone dosage by 2 mg caused a breakout, so I remained taking 30 mg for three years. Yes, three years on 30 mg of prednisone kept me disease free but I had side effects that were sometimes not pleasant for the people around me.

But without knowing it, I felt hope from the very beginning. After my initial diagnosis was confirmed, my first thoughts were that I didn’t want to die, and I was grateful that I didn’t have amyotrophic lateral sclerosi (ALS) or a multi-organ autoimmune disease. So, I had no choice but to find ways to be hopeful. I hoped that I would be able to stop taking prednisone at some point but focused on finding ways to successfully deal with the side effects. I investigated ways to de-stress, participated in biofeedback (a mind-body technique that helps control the body’s functions such as heart rate, breathing, and muscle responses), Chinese Herbal Medicine, hypnotherapy, group therapy, and diet programs because I gained so much weight on prednisone. And to some extent I was successful and made it through those first three years.

After the first three years, I went into remission for the next three years. I felt more “normal,” and went back to the workforce. But unfortunately, the disease returned. However, I immediately knew what to do at the first sign of a mouth sore. My doctor and I came up with a plan for my prednisone dosage (no other effective drugs were available at that time).

Within a few months I was able to again achieve remission, and back to work I went. I even took a road trip across the country. We stopped at the Petrified Forest National Park in Arizona; saw Elvis’ house in Memphis, Tennessee; and stopped in Washington, DC, and New York City. On our return, we stopped at Niagara Falls in New York; a transcendental meditation spot in Fairfield, Iowa, called the Maharishi Peace Palace; South Dakota’s Corn Palace; Mount Rushmore National Memorial; Badlands National Park in South Dakota; and Yellowstone National Park. Driving home to California from Yellowstone was among the most beautiful scenery I had seen across America, and so hard to describe. On the way home we also stopped at the spectacular Grand Teton National Park. After visiting Jackson Hole, Wyoming, and Lake Tahoe, we arrived home after a magnificent trip. It secured my belief in hope, fortitude, and new beginnings.

Inevitably the disease returned after the trip, but I had the knowledge and understanding to deal with it. I researched more about the disease and decided it was time to connect with others, including doctors, also living with the disease. It wasn’t easy, but it ended up being worth my time and energy despite being on prednisone and Imuran. This was a new beginning for me.

I never lost hope. I began finding people like me as the internet was just developing and we were able to reach out to each other. I found wonderful doctors who were willing to support the cause. And, to my amazement, the IPPF became a reality. Not only were we connecting with one another across the US, but internationally as well. Before being diagnosed with PV, I never would have believed that I possessed such determination. As horrible as it was to be diagnosed with PV, it gave me a purpose in my life to find something good and positive to do. Sometimes we think we can’t do something we’ve always wanted to do—or something we never thought we could do. Starting the IPPF changed me. I grew into a different person in the sense that I found something within myself that I didn’t know I had.

I always believed in hope. Sometimes parts within us lie dormant and it takes something like a diagnosis to awaken our inner strength and find a path to our individual new beginnings!

Janet Segall is the Founder of the IPPF and a PV patient since 1983. She is an IPPF Peer Coach and the leader of the Northern California Support Group.