Finding Support

Janet Segall

The need to have connections and support is strong when living with a rare disease. Around 1996, the first IPPF support group started in New York. At first there would be between five and 20 people who joined in person. Groups then started in Los Angeles, Philadelphia, Sacramento, the Midwest, and Toronto soon after. People told me how helpful attending a support group meeting was for them. For me, meeting others who needed the camaraderie of being around people who knew what I was talking about was enlightening, and I learned new things. Through my own increased knowledge, I was able to continue helping others through the Foundation.

After the IPPF support groups started across the US, I started thinking about people in other countries. I imagined they needed help and support as well, and I asked myself, what could I do for them? In 1998, a woman in England connected with me and let me know that she was interested in starting a support group in the United Kingdom. She wanted the blessing of the IPPF, so I traveled to England and met with Dr. Martin Black, a leading UK bullous disease dermatologist. The first support group in England started, and it leaned more toward advocacy.

Then, in the early 2000s, PEM Friends UK was established and is a very successful group that continues today. With the support of different people and physicians around the world, I was able to attend a new group that was starting in Italy and met with a patient in Paris, who set in motion the group in France (both of which are still going today). Groups became a reality in Germany, the Netherlands, Japan, and Australia as well. We even held an IPPF meeting in London soon after PEM Friends started with people in attendance from around Europe.

Starting in 1998, the IPPF has held an annual Patient Education Conference to connect patients with leading experts in the field of pemphigus and pemphigoid. Typically, the conference is held in person; however, since 2020 and the start of the COVID-19 pandemic the annual conference has been held virtually. It is important for all of us to connect, even virtually, and I encourage everyone to attend this year’s virtual conference (October 27-29). Gaining knowledge about our diseases from each other and the expert physicians that join us, and feeling the emotional support we provide to each other, makes a difference in our journey. Hopefully, we will be able to meet again in person one day. (Our conferences are not only about gaining information and supporting each other, but we also have fun!).

Throughout the years after starting the Foundation and connecting with one another through support group meetings and patient education conferences, I have learned that we all need each other, whether we are in remission or still dealing with an active issue. I’ve been in remission for 20 years without medication and a little activity that comes and goes by itself. I can’t walk away. I’m committed to trying to help whenever and whomever I can. And I am still learning from others as well. We always keep learning. I encourage everyone to pay it forward in our community in whatever way they can. With the number of support groups that exist today, it’s clear to me that we still need each other to help us heal. Check out the IPPF’s event section (pemphigus.org/events) for information about support groups in your area. You can support a new patient by sharing your story: consider writing it for the Quarterly. Consider joining a support group or starting a new one. I know we have helped each other over the years. There are new people being diagnosed with either pemphigus or pemphigoid who need support. So many people have helped each other, even virtually. Be an inspiration and bring support to our community!

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.