We the People
Becky Strong
W
hen I first started to share my journey as a pemphigus patient, it wasn’t too intimidating to educate my family and friends. I even advocated to the medical and dental communities, encouraging them to learn more about autoimmune blistering diseases so others didn’t have to go through what I went through. But the thought of knocking on the doors of my elected state and federal representatives? Terrifying. I needed an opportunity and the courage to make the jump. Speaking to our legislators can be intimidating. When asked to describe her own experience with rare disease advocacy, IPPF Mid-Atlantic Support Group Leader Carolyn Fota said the following: “At first, I was very shy in participating. I was very new to having a serious disease—what did I know? What I learned is that people really do care, and they want to know about
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Quarterly | Winter 2019
your experience in having a rare disease, not that you're an all-knowing expert on your illness. Once I understood this, telling people my story was easy.” Bryon Scott, IPPF Awareness Ambassador, offered his own advice. “Take the opportunity to spread your audience base. You are already advocating as you talk to family members, friends, and possibly neighbors. Just take what you are doing and make the circle a little larger.”
But how? I’m just one person with a very rare disease!
You are also: • A registered voter who is part of the election process. Whether or not you voted for a particular candidate, they are supposed to work for you.
www.pemphigus.org
