Niagara Gazette — Three years ago, I never envisioned myself as an advocate for an incurable disease.
I did not envision battling the disease, myself. Nor did I ever imagine it being a serious and disabling form of arthritis. I was no longer the invincible teenager living a care free and healthy life; I had been diagnosed with rheumatoid arthritis at age 17.
Rheumatoid arthritis (RA) is a non-curable autoimmune disease, where the body’s immune system mistakenly attacks and destroys not only the joints of the body, but internal organs as well, such as the heart, eyes and lungs. The attacks and destruction cause pain, swelling, inflammation, fatigue and many other symptoms.
When diagnosed, I had never heard of the disease and realized others had never heard of it either. I looked for help and answers and came across the Arthritis Foundation, which provided me with the tools and resources I would need throughout my diagnosis and treatment.
After raising more than $11,000 for the Arthritis Foundation last summer and spreading awareness of the disease and its 100 different types, I looked for more ways to better myself as an ambassador and an advocate. When I heard about the annual advocacy summit, held early in March, I realized attending the summit would be the best way to do so.
Held annually for the past 15 years, the summit brings more than 350 advocates from all 50 states together to educate Congress about arthritis and to urge action for more support, in the hope of preventing, controlling and curing arthritis. The summit allows arthritis advocates to let their voices be heard on behalf of the 50 million adults with some form of arthritis in America and the 300,000 children as well.
It was my honor to attend the summit. I not only became more educated on matters regarding Congress and their decisions on healthcare, but I was able to meet others with arthritis, especially young adults like myself. The summit was a chance for me to let Congress know that “ignoring arthritis is unacceptable.” This phrase was a common statement for us when speaking with members of Congress and/or their assistants.
Part of our job in D.C. was to express to Congress three main objectives. We expressed our hope they could help patients save hundreds of dollars per month on medications, help more children gain access to rheumatologists — particularly in the 11 states without a single board-certified, practicing pediatric rheumatologist, and seven states with just one — and to ease the burden of arthritis, especially for those in active duty.
My mom and I had the opportunity to meet the executive assistants of U.S. senators Kirsten Gillibrand and Charles Schumer and I shared my story with them about how difficult living with arthritis is on a day-to-day basis, especially as a young adult. Although times are tough in our economy and Congress is facing major budget problems, it was still important for us to make it known that arthritis is the leading cause of disability in the U.S. and it is an issue that should not be ignored.
Whether Congress supports our objectives, my mom and I plan to continue to be strong advocates for those battling this debilitating disease. The experience I gained from attending the summit was truly inspirational and I am certain I will take what I learned with me when spreading the word to increase awareness of arthritis.
Chelsea Pelsone, a junior at Niagara University, was named Emerging Leader of the Year in 2012 by Leadership Niagara. To donate to her efforts send a check to the Arthritis Foundation in care of Chelsea Pelsone, Box 1094, Buffalo, NY 14226.