You don’t have to be a Navy SEAL, firefighter, or an NFL football player to be resilient. Resilience is a common trait that you can build upon by developing certain skills. Research has shown that while some people are naturally more resilient, these behaviors can also be learned. Here are some techniques to foster your own resilience.
Having a rare autoimmune disease is scary. Once you receive a diagnosis by a dermatologist experienced in treating pemphigus, it’s advisable to have all of your doctors communicate with your dermatologist (Internist, OB-GYN, Dentist, Orthopedist and other specialists).
For the past four years, I have joined IPPF patients and others in the rare disease community across the country in advocating to congressional members in my district. The IPPF is joining forces again this year with Rare Disease Legislative Advocates (RDLA) for In-District Lobby Days from August 7, 2017 through September 6, 2017.
In January 2013 my husband was diagnosed with prostate cancer. Thankfully, after surgery he was cancer free. But in May 2015 our whole world seemed to turn upside down when he came home with a very unusual sore in his mouth. Fearing the cancer had returned, Tony went to our family doctor and was immediately sent to an oral surgeon for a biopsy. He had the results within days, but the outbreak spread like wildfire.
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.”