Rheumatoid Arthritis Takes Toll on Young Adults
New treatments help young adult RA patients avoid damage, disability.
June 16, 2011— -- In the summer between high school and college, Angela Lundberg saw a life full of possibilities turn into one of limitations when doctors explained that the pain that had started in her feet and spread to her fingers came from rheumatoid arthritis.
"The only person I knew who had it was my grandma and she got it when she was in her 60s, I think," the Minneapolis native, now 32, recalled. "The day I was diagnosed, I remember going home from the doctor's office and crying alone in my room thinking about my grandmother's ugly twisted fingers and collapsed knuckles. Was that also my fate at age 18?"
Although Lundberg had no idea that the complicated and incurable disease could strike in the prime of life, a surprising number of the 1.3 million Americans with rheumatoid arthritis are young adults from 18 to 40. These are prime years for building careers and having children, when they can hardly afford to have plans disrupted.
"The best estimate of risk is 1 in 400 to 1 in 500 women in their 20s and probably closer to 1 in 1,000 or less in men [in their 20s]," said Dr. John M. Davis III, a consulting rheumatologist at the Mayo Clinic in Rochester, Minn. "The peak age of onset is in the mid-50s."
The higher incidence among women reflects the likely influence of hormones on the interplay of genetics and environmental factors thought to underlie the disease.
Young adult patients easily slip between the cracks because, frequently, they don't look sick, even as the disorder inflames and then chews up the lining of their joints and silently ravages their eyes, damages their hearts and scars their lungs.
Sometimes, youthful invincibility and denial delay diagnoses for relatively young victims. At 28, Yvonne Evans was a slim, super-fit professional singer who had played soccer, basketball and competed in Scottish dancing. When she injured her knee at her day job and watched it balloon to "the size of a grapefruit," she just toughed out the pain and swelling with exercise and physical therapy.
Five months later, she finally saw an orthopedic surgeon, who repaired cartilage, removed a bone spur and took biopsies that confirmed his suspicion that extensive inflammation came from rheumatoid arthritis.
When Angela Lundberg, 32, was diagnosed at 18 with rheumatoid arthritis, she wondered if that meant she'd be crippled and in pain, just like her grandmother.
Young adults with RA often make treatment decisions without any peer support. Even during her college years, Lundberg "didn't know anybody" with rheumatoid arthritis. At 19, she checked out an Arthritis Foundation support group, only to find a room filled with faces far older than hers. She walked out more depressed.
Although the Arthritis Foundation in recent years has begun including young adults in its conferences, Lundberg has only recently found camaraderie in meeting monthly for coffee or dinner with two other young women she met at an Arthritis Foundation meeting in September.
Evans, who says she has found it empowering to become an activist for younger RA patients, believes social connections are critical: "Young adults should find support, or better yet, create support."