There are many difficult aspects of life with pemphigus and pemphigoid (P/P). First, one has to live with painful and debilitating blisters on their skin and/or mucous membranes. Second, a patient has to find a doctor that has not only heard of the diseases, but knows how to treat them. A patient then has to experience the trials and tribulations associated with the treatments of these rare diseases. The sheer fact of living with a disease that no one really knows about can be extremely difficult to cope with. With everything that a P/P patient has to endure, there can be serious effects on one’s spirit, mental health, self-esteem, and well-being.
At the IPPF, we have found that our regional support groups greatly help P/P patients’ and caregivers’ well-being. The value of social support while living with P/P in immeasurable. Our support groups are led by an individual in the P/P community who has been affected by one of the diseases and wants to do more to help others also suffering from P/P. These are not formal group therapy sessions, but rather social settings to discuss diagnosis, symptoms, treatment, and support. The most important goal of our support groups is to help individuals realize that he or she is not alone in this journey — there are others out there experiencing the same thing. This knowledge is often a huge stress relief to a patient and/or caregiver.
When I started at the foundation in March of 2014, we had two active regional support groups. One in Houston, TX that met quarterly, and one in Southern California that met annually. Today we have six active support groups!
The Houston Support Group is led by pemphigus vulgaris (PV) patient, Mary Lee Jackson and meets every 3 months at the Bayland Community Center.
The Southern California Support Group is led by a committee of patients: Mei Ling Moore, Marc Yale, Sonia Tramel, Lee Heins, and Todd Kuh. The Southern California Support Group meets annually at the Santa Monica Public Library.
“Since not everyone can attend the Annual Patient Conferences held in different cities, it’s great that we can have our annual local support group and that everyone gets to take home with them a little bit more knowledge than they had before and have made new friends. Marc Yale (Senior Peer Health Coach & Todd Kuh (President, IPPF Board of Directors) and I live here, so we get to meet everyone who we normally only communicate with via email or phone. We’re very happy when we can all get together!” – Mei Ling Moore
The South Florida Support Group is led by PV patient, Nancy Corinella and meets 3-4 times a year. The next meeting is March 13, 2016. You can register here.
“If anyone is thinking of starting a support group, stop thinking about it and do it. It will be one of the most satisfying things you do in your life. You will be helping others navigate this disease a little easier than you did because they have a group of people to give them information that may not have had access to. Starting a support group has helped me to focus on others instead of focusing on my own disease.” –Nancy Corinella
The Boston Support Group is led by patients Ellen Levine and Sam Iwamoto. The Boston support group was an active group in the past and has now been revived by Ellen and Sam. They met for the first time again in September 2015. Be sure to be on the lookout in our eBlasts for their next meeting.
“After starting up and leading the Boston Support Group for several years, Alan Papert passed the baton over to us to resume and organize future Boston-based meetings. We had a tough act to follow! Since Ellen had several years of pemphigus experience under her belt, and as Sam was a new MMP patient, we felt we could approach organizing meetings and setting the agenda from our different perspectives. So far, we’ve organized one meeting held during the fall of 2015 and have plans to organize another meeting during the spring of 2016. We hope that the collective experience of group members, along with their knowledge of regional resources (doctors, dentists, hairdressers, etc.), coupled with resources provided by the IPPF, will prove to be valuable for those living with autoimmune blistering diseases in the New England area.” –Sam Iwamoto and Ellen Levine
The Tri-State Support Group was also a group that existed previously and has since been revived by patients Esther Nelson and Matt Koenig. They met for the first time again in November 2015 and will be meeting again early in 2016.
“As a co-support leader who has PV, I am paying it forward. I got support from the IPPF through my wonderful coach, IPPF recommended doctors, IPPF conferences, etc. I want others to feel support and feel better. For the past few years, the Tri-State support group was inactive and now that I am doing well (also because I got a lot of support from a friend’s friend’s friend who has PF), I want to help others. We are not alone here. We all need help and support in life, especially with this.” – Esther Nelson
The Austin Support Group is our newest group and is led by pemphigus foliaceus patient, Rudy Soto. The first meeting for this group will be January 30, 2016. You can register here to attend!
“I decided to lead a support group in order to help others near and far who are suffering from pemphigus and have questions or concerns. Whether a patient or a loved one of a patient, we all suffer in some way and at times just need someone to speak with who has or is experiencing the same. Someone to offer hope and words of encouragement that there is a light at the end of this path. Just knowing that I have helped someone along this journey is very satisfying, and it is an overwhelming feeling.” – Rudy Soto
Support group meetings don’t need a room of 30 patients to be helpful. All you need is two people. You and one other person. To be there to support each other through what one another is going through. You both have more understanding than anyone of what you are going through. Each support group is unique and special, but they provide a very important purpose — social support. With proper support, it can make a world of difference in living with these rare diseases.
If you are interested in starting a support group in your area, please feel free to reach out to me, firstname.lastname@example.org. Be sure to read through our monthly eBlasts to see what support group meetings are coming up next. Also, be sure to check out our events page for upcoming meetings.