Becoming "that person" Janet Segall's Journey to Creating a Lifeline

In 1983, Janet Segall’s life took a turn she never imagined. At 36, she was diagnosed with pemphigus, a rare autoimmune disease, and her world unraveled. Her dentist read from a medical book that bluntly labeled her condition as “fatal.” There was no internet, no community, and no roadmap for navigating this diagnosis. “I never thought I was that person,” Janet reflected years later—the type of person who envisioned starting something big or changing the world. But sometimes, life’s unexpected detours reveal a purpose far greater than the plans we’ve laid for ourselves.

At the time, Janet was a single mother whose primary fear was leaving her daughter an orphan. The disease’s symptoms were relentless, and their impact was devastating. She could only take prednisone at that time. She lost her job due to physical symptoms, filed for bankruptcy, and moved in with her brother in Berkeley as she struggled with side effects.

In the middle of this chaos, 10 years later at the end of 2 remissions, she took a road trip along the West Coast with her daughter to look at colleges—to reset with her daughter, being free from prednisone at the moment. However, after the trip the disease returned. With clarity and determination, Janet declared, “I need to start a foundation.” At the time, it sounded impossible. 

Years earlier in her 20’s, Janet’s plans had also taken an unexpected turn. Growing up on the East Coast, she always dreamed of moving to California because she had visited there as a child. But when her father passed away unexpectedly, those plans were put on hold. She built a life in Manhattan, but the dream of California never fully faded. A year later, having a drink with a friend, they decided to go on a whim, road-tripping west with just $400 between them. She thought she was starting fresh—but little did she know she was planting the seeds of a worldwide community.

When Janet envisioned a foundation, it wasn’t about science or big ambitions. It was about people. Not knowing where to start, she poured through articles and wrote letters, signing them “Janet Segall, PhD” to ensure they were taken seriously (PhD was slightly stretching the truth, but gave her the attention she needed). One of those letters led her to Dr. Anhalt, who encouraged her to build the foundation, offering contacts and his name for credibility. Janet didn’t hesitate. She went to bookstores, bought every book on starting a nonprofit, and, with the help of her brother and a few friends, launched what would become the International Pemphigus Pemphigoid Foundation (IPPF).

At first, Janet couldn’t have imagined the foundation growing beyond a few people. She didn’t see herself as a changemaker or an activist. However, the foundation resonated with people across the globe. As the internet grew calls and e-mails came flooding in, support groups popped up, and patients began joining the Foundation’s Board. Her mission was never just about the disease—it was about connecting humans, creating a space where no one felt alone.

Despite believing she was “never that person,” in hindsight, the seeds of her resilience were always there. As a child, when Janet wanted piano lessons, her parents told her to teach herself first and she did. When she wanted contact lenses, they challenged her to save part of her allowance at 50 cents a week. Soon enough her glasses were in the back of the drawer, and she saw the world through her contacts. These small moments of determination shaped the person she became—a woman who had the strength to create something extraordinary.

Janets' story is a testament to how life’s unexpected challenges can lead us to our true purpose. The plans we make may change, but the purpose we discover along the way has the power to flourish in ways we could never predict. Today, Janet continues her mission, inspired by the kindness and commitment of a community she never planned to lead but now can’t imagine living without.

Learn more on how YOU can be involved:

https://fundraise.pemphigus.org/fundraiser/5960776