It wasn’t easy getting to this meeting. After a four-hour train ride, I decided to walk to my hotel, nearly two miles away. It was rush hour, days after a major snowstorm. Boston was cold, and the streets were crowded with traffic barely visible beyond mounds of blackened snow. The walk was neither refreshing nor picturesque; it ended with a gauntlet of addicts outside the methadone clinic near my hotel. No sooner did I arrive in my hotel room when the phone rang. He was early, and I was spent. Everyone has a story.
It started with a vision to make more people aware of pemphigus and pemphigoid (P/P). Those following the IPPF Awareness Campaign may know it was designed as a three-year initiative with January 2017 as a tentative end date. Well, January has come and gone, and the Awareness Campaign—or should I say, Program—is here to stay.
My name is Rudy Soto. I am from the great state of Texas and have lived there all of my life. I am married to a wonderful woman, Jennifer, who is my greatest supporter. We have four awesome children—two girls and two boys who range in age from 5 to 23. My motto is Can’t Grind Me Down, which I took on after I achieved remission in November of 2016.
On Saturday, February 4th, the Mid-Atlantic Support Group held its first meeting in Stafford, VA, with 10 new members attending. This meeting was supported by Vicky Starr and Diplomat Pharmacy.
Carolyn Fota approached the IPPF last fall about starting a support group in her area. Her reason for wanting to start a support group was simple. “I feel so much was given to me through the IPPF — it’s the least that I can do. This illness that we share, although serious, doesn’t have to be so isolating, scary and painful especially with a wonderful organization like the IPPF.”
The International Pemphigus and Pemphigoid Foundation (IPPF) is pleased to announce the availability of a seed grant program to encourage and support patient-oriented research of pemphigus and pemphigoid. The intent of these grants is to support well-defined research projects that have a specified benefit for improving the treatment, health, disease management, or diagnosis of persons with pemphigus and pemphigoid. Consideration will also be given to studies that contribute to the body of medical knowledge of pemphigus and pemphigoid.
Rare Disease Day is a day of unity for us patients with rare diseases. I can’t speak for you, but I felt very alone and isolated when I found out I had pemphigus vulgaris. Then I found community in the IPPF. It was very comforting to know there were others out there who had gone through what I was living through. Now imagine being with hundreds of others who have a variety of rare diseases.
Last year was shaping up to be a very important year. I had just gotten an associate degree in journalism and was all set to transfer to a four-year university in the fall to pursue my B.A. On top of that, I turned 21 in February and was looking forward to savoring all the exciting things young adulthood had to offer. It was during this very same month that everything changed.
The end of the year is a great time to look back at our programs and assess the progress we’ve made toward reducing diagnostic delays of pemphigus and pemphigoid. Our patient educators continued to reach more and more dental students at schools across the country.
Pemphigoid Gestationis is a rare autoimmune blistering skin disorder that affects an estimated 1 in 40,000-50,000 pregnancies in the United States each year. United Kingdom figures put it at 1 in 1-2 million people. You could say that each of us is one in a million! No one wants this; most have said that they wouldn’t wish it on their worst enemy. This is my PG story.