There are two things I can specifically recall never wanting to do: public speaking and participating in politics. This is exactly what I find myself doing recently though when the IPPF asked if I would be interested in meeting with the staff of my Senators and Representatives in their local officers to advocate for rare diseases like Pemphigus. I had no idea what this would mean, but I knew this is exactly what I and my rare disease community needed. Having a rare disease has taught me about the beauty of life and not wanting to miss out on any opportunities before me. It has also taught me about helping others and self-growth.
At first, I did not think it was possible to have a full time job as a nurse and meet with politicians, but The IPPF worked with me over the phone to prepare for my meetings and to discuss bills pertaining to rare diseases. I also immediately went online to research my members and their voting records concerning rare diseases.
I met with the staff of Oklahoma Representative Steve Russell, Senator James Inhofe and Senator James Lankford. I found speaking with Congressional staff much less intimidating than speaking with the Congresspersons directly might have been. I was prepared to ask that Representative Russell to join the Rare Disease Caucus in the House of Representatives and to vote for bills allowing patients participating in clinical trials to be exempt from taxing their financial compensation. I was surprised to discover that there were no coalitions in the Senate for rare diseases. When I met with my Senators’ aides I asked that the Senate form such a coalition. I also asked for support of a bill that would allow off-label drugs to be used for multiple purposes.
The Congressional aides I spoke with and
shared my heart with actually listened!
I am neither brave nor eloquent with words but the knowledge that I could encourage the passage of bills to find cures or treatments for people all over the world was inspiring. I quickly found my courage and knew my purpose. The meetings that had initially filled me with anxiety ended up being great. The Congressional aides I spoke with and shared my heart with actually listened! I shared my personal story and asked for their support helping our cause. There was even an emotional moment with a senator’s staff member when our passion spilled over. I am now open to whatever is in store for me as a rare disease patient and advocate. I hope that our combined effort takes the rare disease community closer to a bright future of hope and cures.