Growing up, I always knew that osteoarthritis ran in my family. My mother and grandmother struggled with the disease and one of my earliest memories is of my great-grandmother confined to a wheelchair because of her OA. I was too young to do the math and now realize that she was only in her early 60s. To me, arthritis was just an “old person’s disease.”
I only began to understand how the pain of the disease compromised their lives when I was in my early 40s and stricken with OA so severe I needed a hip replacement.
As I immersed myself in learning about the disease, I quickly learned that my family was not alone. More than 50 million Americans have arthritis and two-thirds are under the age of 65. There are more than 300,000 children living with juvenile arthritis. Arthritis is the number one cause of disability in the U.S.
I knew then that I wanted to help put a face on arthritis — my face — not just for all those who live with the disease but for the many at risk for it. Imagine if we could discover biomarkers to find out if my daughter has a predisposition for OA so we can make adjustments in her life now?
My new mission took me to the Arthritis Foundation, where I began volunteering and telling my story to elected officials to help them understand the impact of arthritis: years of missed work, lost earnings and billions of dollars spent on health care.
That was 11 years ago, and I’ve since made my way up the ranks to be a state advocacy coordinator and serve on the foundation’s national public policy committee. I even had the honor of testifying before the Senate Appropriation Committee’s subcommittee on defense about the importance of preserving funding for arthritis research in the Department of Defense budget — by far the high spot in my life as an advocate. (In case you didn’t know, OA is a leading cause of medical discharge for in active service members who are under age 40.)
For the past 10 years, I’ve also attended the Arthritis Foundation’s annual Advocacy Summit in Washington, D.C. Six weeks ago, I was there once again and, if you looked around the room packed with families, you were immediately struck by the young faces in the audience.
One young man there who was 14 years old came to the stage to tell us this was his eighth visit. It’s hard to believe a 6-year-old’s parents found such a need that they would bring a child halfway across the country to this event, but they did because we still have so much work to do. Drugs to treat forms of arthritis like rheumatoid arthritis are often in the form of biologics and can be cost-prohibitive for families. Research at the National Institutes of Health and the Department of Defense is critical to discovering better treatments and a cure.
May is National Arthritis Awareness Month, so it’s a fitting time for all of us to take a good look at the faces of arthritis. They are all around us. One in five Americans lives with the disease and it is more than just minor aches and pains. It can make it hard to walk, get out of bed or even pick up your child. More needs to be done to increase awareness and find better treatments and, one day, a cure.
It’s a story that needs to be told — 50 million faces at a time.
The author lives in Aquebogue.