Imagine feeling all of your energy sapped suddenly, and no strength to walk up a single flight of stairs. Imagine not being able to carry your groceries or get out of the bathtub.
That was Margaret Corbin’s experience. At age 54 then, she just thought that her body was telling her to slow down. She thought her job of cleaning houses was taking its toll.
“Everyone was telling me to take a hot bath with Epsom salts, and when I did, I couldn’t get out of the tub! My knees were so weak. I thought I was going to pass out. I didn’t have the strength in my arms to get out,” she recalls. “I don’t know how I actually did, but I eventually got out. I couldn’t call anyone because I didn’t have the phone with me. I must have been there for more than an hour struggling. I was never more scared.” It was a particularly daunting experience, given the fact that she lives alone.
She followed the advice of some people at her church, who recommended she see her doctor about getting tested for lupus. After a battery of tests and lab work, the initial results showed no sign of the disease. But when a rash developed along her eyes, and her eyes swelled up, she was told the lab results were read wrong, and she did indeed have lupus.
She spent five weeks in the hospital and another four in rehab, where she had to train her body to do the simple things, such as sitting down and getting up again. That was five years ago.
Now, with several medications, the disease is manageable, yet she still experiences inflamed muscles and weakness in legs. She’s gone back to work, but it took a while to get back to normal after being released from the hospital.
Lupus is a part of the family of diseases that includes rheumatoid arthritis, multiple arthritis, and juvenile diabetes, and a chronic disease caused by inflammation. The disease, which is not contagious but which currently has no cure, affects more than 50,000 Canadians.
There are three major types of lupus: affecting parts of the body, affecting the skin, and lupus caused by medicine. Lupus can affect any tissue or organ of the body, including skin, muscles, joints, blood, blood vessels, lungs, heart, kidneys and the brain. The disease causes the body’s immune system, which is our defence against viruses and bacteria, to start attacking itself. The immune system becomes unable to tell the difference between intruders and the body’s own tissues, so it begins attacking healthy tissue, causing inflammation and creating the symptoms of lupus.
Anyone can get the disease; however, between the ages of 15 and 45, eight times more women than men are affected. Nine out of 10 people who have lupus are women, and lupus is most common in women of childbearing years.
Lupus is two to three times more prevalent among women of colour — African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders — than among Caucasian women.
Black women have the highest incidence of the disease and are three times as likely as white women to get lupus. As many as 1 in 250 young black women will get the disease. Blacks and Latinos tend to get lupus when they are younger; they have more symptoms and have more severe symptoms. Blacks with lupus have more problems with seizures and strokes than white women with the disease. Genes may be the reason for the racial differences.
No one knows the cause of lupus. Because it occurs most often in women of childbearing age, it seems likely to be a relationship between lupus and some hormones.
Inherited traits also make some people more likely to develop the disease. Canadian and international scientists are researching lupus, looking for its cause and possible cures. So far, this work has led to better methods for diagnosing the disease and for calculating flare-ups.
Lupus can target any of the body’s tissues so it is hard to diagnose, so it is called “the disease with a thousand faces”. A characteristic facial rash is often the first clue used to diagnose lupus, however, each person’s experience will be different, and the number of affected areas and symptoms will differ between patients. Early symptoms include severe fatigue, sudden loss or gain in weight, headaches, hair loss, and hives. Later lupus symptoms include joint pain, a red facial rash, small painless sores inside the nose or mouth, chest pain, and swelling of feet and legs.
The disease is chronic and often appears in cycles, and an consist of phases of acute symptoms, chronic but less severe symptoms, and a remission phase without symptoms. A flare in symptoms can be caused by being overly tired, intense stress, and poor diet. The treatment plan for lupus is specific to each person and depends on the symptoms they are experiencing. Medications used include nonsteroidal anti-inflammatory drugs (NSAIDs), used for mild lupus to reduce pain and swelling in joints and muscles; corticosteroids used to reduce swelling, tenderness, pain, and calm the immune system; antimalarial drugs used to treat joint pain, skin rashes, and mouth sores; and immunosuppressive agents and chemotherapy, used for severe cases of lupus to suppress the immune system to limit damage to organs.
There is no cure for lupus, but with treatment, a normal life expectancy is projected. Having lupus increases the risk of developing other health problems and can cause diseases like heart disease and osteoporosis to occur earlier in life. Those with lupus are at risk for coronary artery disease, in part because of risk factors including high blood pressure, type 2 diabetes, and an inactive lifestyle due to fatigue, joint problems, and muscle pain.
Women with lupus are 50 times more likely to have chest pain or a heart attack than other women. Women with lupus have more bone loss and breaks than other women, because of effects from medication, lupus itself, and an inactive lifestyle.
An important part of dealing with the condition is learning about the individual pattern of symptoms and flare-ups. An increase in the severity of symptoms often follows a predictable course, so an attentive patient can be alert for problems and work with their doctor to catch flares early.
In addition to a person learning about their body and being attentive to symptoms, it is also highly helpful for patients to develop strong, communicative relationships with their doctors. Support from family, friends and peers in a lupus support organization can also help in making treatment more effective. It is also useful for a person to make healthy lifestyle choices, such as setting realistic goals and priorities, sticking to a healthy diet, getting sufficient sleep, moderate doctor-approved exercise, and practicing coping skills.
More information about Lupus is available from Lupus Canada, at 1-800-661-1468 or www.lupuscanada.org.