Janet Segall: Foundation of Hope

Our “Inspiring Hope” series shares patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. This week’s story, Foundation of Hope, comes from Janet Segall, the founder of the IPPF.

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I know many of you can relate to how it first felt being diagnosed with pemphigus or pemphigoid (P/P). After about a year of symptoms, I was diagnosed in 1983 and in a daze. I was in my mid-thirties and raising a child by myself. She was six years old. 

Although it took about a year to get an official diagnosis, I got one pretty quickly once I had more than one or two lesions. Prior to receiving a diagnosis, I went to the dentist to get my teeth cleaned and mentioned to him that I had these body and mouth sores. He got a book from his shelf (no internet yet), opened the page to pemphigus vulgaris (PV), and read, “sores on the body, sores in the mouth—this could be pemphigus vulgaris.” As he read the description of the disease, I knew that was what I had. The last words he read were, “This is a fatal disease.” I walked out of his office with my head down, feeling numb; his staff looked at me like I was a corpse. My first thought was about who would take care of my daughter since she had lost her dad when she was a baby.

I wanted to find other patients. First, I called my doctor and asked if she had heard of a support group or foundation, and she told me there were none. I felt very alone. I thought a lot about starting my own organization right away, but I hadn’t reconciled the fact that I had this disease. Finally, after living with PV on and off for over 10 years, I decided to start a foundation.

The National Pemphigus Vulgaris Foundation was born in 1994 with help from one of the finest dermatologists in the country, Dr. Grant Anhalt, at Johns Hopkins University. He supported me throughout the entire process. The Foundation started as a support network for PV patients, but we later added pemphigus foliaceus and pemphigoid. When the Foundation became the International Pemphigus and Pemphigoid Foundation (IPPF), it was exciting. Traveling overseas to Israel, Italy, and London to start support groups was thrilling. Uniting people from across the globe in their quest for answers made me feel that I had done something good.

The Foundation’s main vision when it started in 1994 was to make sure that no one with P/P would ever feel alone like I did during those first years after I was diagnosed. I am in awe of the wonderful people who have worked so hard to make this organization into what I dreamed about. Thank you to everyone who is committed to this endeavor.

I am so grateful for experiencing the growth and success of the first 26 years of the IPPF. For the next 26 years, I hope for a cure for P/P and that more people will continue to care and help each other.

Janet Segall is the Founder of the IPPF and a PV patient since 1983. She is a peer health coach and works in Sacramento, CA in the mental health field.