Why I Advocate for Arthritis: A Patient’s Perspective

I was diagnosed with RA almost 15 years ago, after being misdiagnosed for four years. I am now 61. The delay in receiving an accurate diagnosis caused me to pay a high price in my health due to the lack of immediate, aggressive treatment. My experiences with RA and the enormous challenges of finding the right treatment inspired me to join the ACR’s Advocates for Arthritis, uniting with fellow patients, rheumatologists, and others to educate members of Congress about our diseases and treatments.

I am considered treatment resistant, as none of the biologic drugs have worked for me. The ongoing, fast advancement of my RA has caused considerable damage to my joints and connective tissues, including the ligaments and tendons. I have had to walk with a walker for the past three years because my right foot has turned inward, leaving my balance unpredictable. I have fallen several times in the past few years, broken my left wrist twice, and have had fractures in my spine. Additionally, my hands continue to become more deformed over time. Simple tasks that I once took for granted are now impossible as my disease continues to advance without anything to slow down the process. I live daily with excruciating pain.

My story is one of millions of stories across America. That is why I consider myself to be fortunate indeed to have been able to take part in the ACR’s Advocates for Arthritis fly-in conference, so that I can share my personal story. We need the help of members of Congress to ensure that greater funding becomes available to researchers for improved treatments for people with rheumatic diseases, and to ensure that patients like me may actually have access to those treatments once they become available, without excessive patient cost-sharing or coinsurance fees.

Awareness is key, and the ACR does an amazing job at bringing knowledge to those lawmakers who can make these life-saving decisions. Bravo, ACR! I have lived, survived, and often thrived with severe RA, moderate lupus, and Sjögren’s syndrome for the past 15 years. This is a very personal journey for me. Joining other ACR advocates, whether I am physically in Washington, D.C., or as a virtual participant, is a great passion of mine. I may never see a cure for these devastating diseases in my lifetime, but I am proud to work together with rheumatologists, health professionals, and other patients to ensure that generations after us can live the cure.

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