Welcome to our “Inspiring Hope” series. For the next several weeks, we’ll share patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. Our third story comes from Hannah Yale in California.
I was four years old when my dad got sick the first time. For six months he was undiagnosed, and during that time he went blind in his left eye. When he was finally diagnosed with mucous membrane pemphigoid (MMP), my dad got in touch with the IPPF. The IPPF helped him get in touch with other patients who were experiencing, or had already experienced, diagnosis and treatment. The Foundation also gave him a list of doctors who knew how to treat pemphigus and pemphigoid (P/P) to ensure that he received the care he needed. I went to the hospital with my dad every day for his rituximab and IVIG treatments.
In 2008, the IPPF held its annual Patient Education Conference in Dallas, Texas. I went with my mom and dad to meet other patients and families who had been affected by P/P. At the conference, we found a community. My entire family has been involved with the IPPF in some form ever since.
After my dad connected with other pemphigus and pemphigoid patients, he began sharing his own experiences with diagnosis, treatment, and dealing with the effects of his disease. When the IPPF created the Peer Health Coach program in 2018, my dad became one of the first coaches. Just as I was entering high school in 2016, he became the executive director. Around the same time, he had a relapse of his MMP, but was able to recover quickly with rituximab treatment.
Empowerment Through Community
I have often felt powerless when my dad has been sick. Three years ago though, I learned that I am not powerless to help him. In 2017, my dad took me to Rare Disease Week on Capitol Hill, an event organized by Rare Disease Legislative Advocates. We attended with a group of patients, caregivers, and doctors representing the IPPF, and our goal was to speak to members of Congress about legislation that would benefit people with all types of rare diseases. I was able to meet so many wonderful people who shared my feelings and experiences. Going to Rare Disease Week made me realize that even as a teenager, I could make a positive impact.
I now know that I can help people just like my dad always has, and that I am passionate about nonprofit work. I am proud to be able to represent the IPPF through my advocacy for accessible care and treatments. I know that my relationship with the IPPF will continue to grow as I do. The IPPF’s generous staff, compassionate volunteers, and inspiring programs have supported me throughout my life, and they have helped shape who I am today.
Be a Healing Hero
Healing Heroes fund the future of the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid.
By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:
NO DISEASE IS TOO RARE FOR A CURE!
Whether you’re a patient, caretaker, family, friend, medical professional, or rare disease advocate, your monthly gift allows us to not only sustain current programs, but also expand our key areas of operation: patient support, education, awareness, research, and advocacy.
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Hannah is a 17-year-old California resident and a human rights activist. She is a member of the Young Adult Representatives of RDLA and has attended Rare Disease Week on Capitol Hill every year since 2017. Hannah is a first-year student at St. Mary’s College of Maryland, double-majoring in Public Policy Studies and English.