Young Adults Living With RA
When rheumatoid arthritis strikes decades earlier than usual.
By Carolyn Sayre
Last winter, after spending a few afternoons shoveling snow, Heather Miceli, 27, woke up in the middle of the night and couldn’t get out of bed. “My joints had swelled up so much that I couldn’t move without crying,” she says.
Two months later, the college professor at Johnson and Wales University in Providence, R.I., who had always been healthy, was diagnosed with rheumatoid arthritis (RA) — a debilitating autoimmune disease that causes inflammation and swelling in the joints and surrounding tissues, most commonly in the wrist, fingers, knees, feet, and ankles. Other organs such as the lungs, skin, and eyes can also be affected.
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Most people think of rheumatoid arthritis (RA) as a disease that causes joint pain. But if you have RA, you know that fatigue and weakness can exact their toll as well. “RA is actually much more than a joint disease,” says M. Elaine Husni, MD, MPH. Husni is vice chair of rheumatology and director of the Arthritis and Musculoskeletal Center at the Cleveland Clinic. “RA is a systemic [body-wide] inflammatory disease,” she explains. “That’s why you get the other, what we call “constitutional,” symptoms…
“It came out of nowhere,” says Miceli, who started experiencing severe fatigue, joint pain, and stiffness. “My husband had to dress me. My hands were so swollen that I couldn’t wash dishes or grade papers. I was so scared. I didn’t know what was happening to me.”
RA in Young Adults: How Common?
Miceli’s plight is more common than you may think. RA, which affects 1.3 million people in the U.S., is typically diagnosed between ages 30 and 80, but also occurs in young people.
“The chance that a young adult will develop RA is more common than previously thought,” says Cynthia Crowson, MS, a Mayo Clinic biostatistician and RA researcher who recently published a paper in Arthritis and Rheumatism on the lifetime risk of developing several autoimmune rheumatic diseases. Crowson says that the odds of someone in their 20s developing RA is 1 in 714 for women and 1 in 2,778 for men.
Certain factors can increase that risk. According to Rebecca Manno, MD, MHS, a rheumatologist at Johns Hopkins University School of Medicine, smoking increases the chance of developing RA if a person is already genetically susceptible to the disease. Family history, she says, is another important risk factor, because autoimmune diseases tend to run in families.
Manno says young adulthood is a particularly difficult time to be diagnosed with RA, both physically and emotionally. For many patients, the pain and joint destruction the disease causes can be managed with medications such as disease-modifying antirheumatic drugs, anti-inflammatory drugs, and steroids. Many can have side effects such as liver damage, weight gain, and increased susceptibility to infection.
“The diagnosis is overwhelming for young adults, who in most cases think they are invincible, and haven’t had any experience with the health care system,” Manno says. “Medically, you have to think aggressively – someone who is 20 has a lot of years to develop damage from the disease.”
Before she found the right mix of medications, Theresa White, 29, an office manager from Williamsport, Pa., couldn’t function normally. “Ironically, my 70-year-old mom had to take care of me,” she says. Even now, White is only able to work part-time and is unable to participate in activities she used to enjoy like Pilates. “It’s hard for me to do most things normal 20-somethings do,” she says.
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