October 17, 2015, I was a newly retired Lieutenant Colonel, United States Army, Medical Service, who was finally going to enjoy time with family after a simple surgical procedure at Walter Reed National Military Medical Center, Maryland. However, within twenty-four hours of the procedure hives and then blisters were breaking out on my back and chest. My skin itched horribly and I was in severe pain. It was the beginning of a nightmare that I never expected. 

By December 2015, a small army of medical staffs at Stafford Hospital, Virginia, Fort Belvoir Community Hospital, Virginia, Walter Reed National Medical Center, Maryland, and the Mayo Clinic, New York, were all collaborating on my medical care while conducting a large array of medical tests on me. By February 2016, I was diagnosed with Bullous Pemphigoid (BP). My treatment consisted of steroids, anti biotics, pain medications, mouth rises while my arms and legs were wrapped in sterile dressings after topical steroids were applied. I was scared, depressed, and felt very isolated. 

I contacted the International Pemphigus/Pemphigoid Foundation (IPPF) and spoke with Marc Yale who was a Peer Health Coach at the time, and the first thing that he said to me was “you’re not alone, and you now have a community of people who care about you.” Through patient services like Peer Health Coaching, support groups, educational webinars, an amazing online resource library, Pem Press, research updates, and the annual conference. I learned a lot about BP and I made a lot of friends.

It's been about 2.5 years and I've learned how to manage my condition, advocate for my care and yes, have a life - and I am doing well. I am grateful to IPPF, friends, family, my faith. I've always remembered what Marc first said to me, "you're not alone and people care about you."

Carolyn Fota