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.
Delayed Diagnoses and Denial Among Young Adults With RA
"I burst into tears," Evans, now 42, recalled. She then worked her way through a series of non-steroidal anti-inflammatory medications including Motrin and Celebrex, and the anti-malaria drug Plaquenil, but "none of them did anything."
A subsequent course of methotrexate, a powerful chemotherapy drug that can slow the progression of the disease, brought no relief.
In 2003, she began taking Enbrel, one of the injectable biologic medications that have revolutionized RA treatment and made remission a realistic goal for many newly diagnosed patients. Within two weeks, she went from "a walk to a jog with my dog in the park," and jettisoned the cane she'd used for several years.
"It changed my life," Evans said in an interview this week.
The medication helped her become physically active again, although she has learned the hard way that overdoing it can trigger flare-ups. The Granada Hills, Calif., woman became a YMCA certified aquatics instructor, helping herself and her students maintain strength, flexibility and mobility, in keeping with the concept that "To Rest Is to Rust."
"The goal of therapy these days is remission of disease, it's not just making people feel better," said Dr. Eric M. Ruderman, a rheumatologist and associate professor at Northwestern University Feinberg School of Medicine in Chicago.
He and his colleagues recommend early use of biologic drugs to stave off the joint damage that compromises quality of life and leads to disability. These include the widely used tumor necrosis factor inhibitors Enbrel, Remicade (infliximab), Humira (adalimumab) and some newer drugs in the same group, Simponi (golimumab) and Cimzia (certolizumab pegol); along with Orencia (abatacept), Rituxan (rituximab) and Actemra (tocilizumab).
The biggest side effect of the medications is infection, with a rare but potentially troubling side effect of lymphoma. Northwestern's Ruderman, who has been a paid consultant to manufacturers of several of the drugs, said RA itself is associated with double or triple the risk of lymphoma and that, so far, the risk of side effects doesn't seem to increase with duration of biologic drug treatment.
Unlike older patients, those diagnosed as young adults might be on the medications for many decades, assuming they have insurance that covers what can run to tens of thousands of dollars a year. For now, Evans believes her dramatic improvement has made the risks worth taking. "I can't believe I'm saying that about a biologic drug that could potentially cause lymphoma," she said.
For Lundberg, who takes both Remicade and methotrexate, "the benefit of being able to live as normal a life as possible and be out of pain outweighs the possible side effects."
She has pushed through 14 years of intermittent pain, stiffness and fatigue and vented some of her frustrations in a blog she calls "Inflamed: Living with Rheumatoid Arthritis." For now, she has reached a kind of truce with the disease. "I'm not in remission, but my arthritis is pretty stable."
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."