Terri-Lynn Collings had swollen fingers and wrists, sleepless nights and problems in bending her elbows. Like many young women, Collings, then in her 20s, wrote off the symptoms to muscle strain and figured they would eventually subside. They didn't. When she noticed she could no longer even form a tight fist, and that it was taking her much longer to get ready for work each morning, she thought that maybe her condition was more serious than tendonitis. A family doctor referred her to a rheumatologist who diagnosed rheumatoid arthritis (RA) and promptly put her on a treatment plan. Collings, now in her 40s, has never looked back.
Though Collings would never consider herself a poster girl for the disease, doctors would like to see more women who have similar symptoms follow her lead. "The earlier the diagnosis and the start of treatment, the easier the disease is to control," says Dr. William Bensen, a rheumatologist at St. Joseph's Hospital in Hamilton, Ontario. He thinks of RA as a blaze that needs to be controlled. Not put out, you see, controlled. Because even with today's powerful drugs, it's not a disease for which there's currently a cure.
RA affects two to three women for every man, Dr. Bensen told me. The fact that more women than men get the disease is not widely known. Nor is the fact that while young women like Collings can and do get RA, the peak incidence is considered to be age 50 to 65. "It's partly genetic, partly environmental," he says. "We wonder about stress, we wonder about hormonal factors. We know, for instance, that if you have the gene and if you smoke, it's more likely to light the RA fuse." But experts still don't know the whole story.
A chronic joint disorder, RA causes a serious inflammation of the lining of the joint capsule. The inflammation increases the level of fluid in the joint and leads to the thickening of the lining itself. Over time, the bone is eroded and the support structures around the joint are weakened. While that may sound almost benign, it's anything but: Tendons can rupture, muscles can waste and the joint can start to move in directions it's not supposed to. With all this comes pain, stiffness and swelling.
RA falls under the umbrella of autoimmune disorders, but Dr. Bensen prefers to call it an inflammatory disease because he says it is not autoimmune in the way that, say, lupus is. "The key message," he says, "is early diagnosis and the link to early treatment. Every day we see patients who have waited before coming to us. They may have been told previously that their condition is just due to old age, or that they are imagining the pain and stiffness. When they come we can stop the disease, but if they have waited too long we cannot reverse the damage that has been done."
Dr. Bensen says the typical pattern that leads to diagnosis begins with someone coming into his office with painful swollen joints in the knees, feet, hands, wrists or elbows; they also complain about a constant feeling of fatigue and a loss of good sleep. "Something is off-kilter, and when we examine them we can usually feel the swollen joints. Lab tests can make us feel more confident of the diagnosis. But we then do a high resolution ultrasound which gives us a picture inside the joint as to the degree of inflammation and whether there is already damage to the bone. We put all these factors together and we ask ourselves if it is possibly, or probably, or definitely RA. We then start the treatment accordingly."
At insidera.ca, there's plenty of information on RA including a symptom tracking tool and treatment options. Dr. Bensen says that though some medications carry risks that include a susceptibility to infection, the right medication can control the condition in almost all cases. Terri-Lynn Collings says she's had her ups and downs with various drug treatments -- they would work for awhile, then stop working. She even experienced hair loss. In her view, it's risk versus benefit: "It can be trial and error." But her current treatment has worked for eight years, and she feels good as long as she gets uninterrupted sleep, stays active, eats a balanced diet and takes her vitamins. "I know what my limitations are."
Why women get RA and other forms of arthritis more than men is one of the tasks that Canada's Arthritis and Autoimmune Research Centre has set for itself. Of the over 100 types of arthritis, women are affected in greater proportions in almost all of them. Women also report consistently higher rates of both arthritis and arthritis-related physical disabilities which profoundly affect their family, work and social capabilities. Through research into sex-specific therapies, by deepening the understanding of the genetics behind these diseases, and in further investigating if women have different hormone or immune systems that predispose them to these conditions, they hope to untangle the gender-specific puzzle.
As one of their supporters and someone who struggles with RA, Jennifer Mason shares her story. She was an aspiring musician when her RA was diagnosed in 1980. Back then, there was no sophisticated technology to indicate joint damage, so her flares came and went, worsening over time until both her hands and feet were severely deformed, ending her ability to play musical instruments.
Now Mason is pain-free thanks to the treatment breakthroughs of the past few decades. Says Dr. Bensen: "The research done world-wide in the past 30 years is more than the research done in the last 3,000 years, so we know how to help people with RA. The gap in knowledge still lies in trying to get people to be diagnosed early: Swollen joints, pain, stiffness and fatigue -- if you have these, make sure that you follow through so that RA can be ruled out."
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