On a chilly afternoon in February 2001, Sabrina Pascoa went to a London, Ont., walk-in clinic with flu-like symptoms: body aches, no appetite and a dry cough that kept her up at night. At first, she thought she was dealing with a particularly nasty flu bug, but when she was told to return the next day for blood work, she knew something more serious was afoot. That night, Sabrina went to work waiting tables as usual, but a few hours into her shift she suddenly couldn’t breathe and was rushed to the hospital.
Doctors ordered a series of tests and eventually told Sabrina she might have leukemia. “I freaked out,” she says. “My first thought was, ‘I’m going to die, and I’m only 21 years old.’” But her doctors weren’t certain about the diagnosis, let alone the prognosis. Sabrina remained hooked up to machines in the hospital for a month while they evaluated her worsening condition. “I barely remember those weeks, but I recall waking up a few times and thinking that whatever happens, life will never be the same.”
Eventually, the doctors zeroed in on a problem with her kidneys, which were functioning at only 30 percent. She was finally diagnosed with systemic lupus erythematosus, better known simply as lupus — a disease Sabrina had never even heard of.
Lupus is a chronic autoimmune disease which makes the body’s defence system get confused and attack itself, causing inflammation and damage to tissue and organs. It affects about one in 1,000 Canadians, and women in their reproductive years (ages 15 to 45) are diagnosed eight times more often than men the same age. And that’s pretty much all we know for sure about the disease. Even Lupus Canada describes it as “complex and baffling.”
The first problem is that lupus is difficult to diagnose. No two cases are exactly alike, and symptoms include everything from fatigue, fever and aching joints to chest pain, headaches and shortness of breath. The most telltale symptom is a butterfly-shaped rash that spreads across the cheeks and bridge of the nose, but not everyone develops it. Symptoms can appear suddenly or slowly, may be mild or severe and can also become worse for awhile (called flares) before either improving or disappearing all together.
Then there’s the long list of complications. Depending on which area of your body is affected, lupus can lead to kidney damage, blood clots, seizures and heart attacks. It also increases your risk of diabetes, osteoporosis, bone-tissue loss and cancer. Yet doctors still don’t know what causes it. Although it’s thought that genetics play a role, no one in Sabrina’s family had a history of the disease. Nor does she know what her trigger was. “One of the hardest parts is not knowing if, or when, it will become active,” she says. Lupus can be triggered by hormones, stress, infections, colds and even exposure to sunlight.
The trouble with treatment
Sabrina’s first round of lupus treatment was infusion therapy, injections prescribed when symptoms are so severe that oral medications won’t cut it. Seeing other lupus patients attached to IVs and looking extremely ill frightened her. “The first day I stepped into the treatment room and saw everyone hooked up to machines, I thought, ‘I can’t handle this,’” she says. “I left the room crying.” Each course of medication took three hours and then Sabrina would go home and brace herself for the side effects. She felt exhausted and nauseous, and by the third or fourth treatment, her hair began falling out in clumps. “It was pretty rough,” she says.
Sabrina was finally able to switch to oral medications — her doctors wanted her off intravenous drugs to reduce the risk of long-term problems they can cause, including organ damage and infertility. The latter was of particular concern to Sabrina. “When I was diagnosed, the first thing I asked was if I would die. My next question was whether I could still have a baby someday — and the answer was an absolute no.” She was devastated. Until recently, most experts discouraged patients from getting pregnant because of an increased risk of disease flare-ups and miscarriage (10 to 15 percent higher than in healthy women). Many women with lupus aren’t well enough to consider a pregnancy anyway, while others may be concerned about their baby developing neonatal lupus or about side effects from the medication, which, in rare cases, can cause cleft palates and heart problems in babies.
Sabrina has tried a number of medications over the years, including prednisone (one of the most commonly prescribed cortico-steroid drugs for lupus), which comes with some serious side effects. In the short term, those include weight gain, severe swelling and depression. But it’s the long-term effects from the drugs that both doctors and patients worry about the most. Muscle weakness and bone deterioration are common: Sabrina (now 33) had a hip replacement four years ago and developed arthritis in her knees and ankles.
Part of the trouble is that science has been slow to find medications specifically to treat the disease. (For instance, lupus patients are often prescribed anti-malarial drugs.) “Many of the drugs we use are not actually indicated by Health Canada for lupus,” says Dr. Jennifer Reynolds, rheumatologist and director of the Lupus Clinic at St. Paul’s Hospital in Vancouver. “Yes, they’ve been adopted for lupus and have become traditional therapies, but they weren’t created to treat it.”
The problem, she says, is that it’s a difficult disease to study. “It’s hard to get a group of patients together who all kind of look the same symptom-wise and then see how they respond to treatment. There have been many, many failed attempts to create drugs for this disease.”
Last year Health Canada approved Benlysta, the first medication developed for lupus. Unfortunately, says Reynolds, it can be pricey (about $23,000 a year), and most patients can’t afford it unless they have extended medical coverage.
Living with lupus
“There’s no question that this disease is life-altering,” says Karen Chow, vice-president of Lupus Canada. “Although the symptoms are different for everyone, there is a huge impact on physical and emotional well-being.” Lupus can also be a career killer. Extreme fatigue, crippling joint pain and other symptoms can make it impossible to maintain a nine-to-five job, Chow says. When she was diagnosed, Sabrina continued working full-time (she got a job in a bank after her release from the hospital), but it wasn’t easy. “I’d come home after an eight-hour day and just fall into bed,” she says. But she couldn’t quit because she needed the health coverage from her job to afford her medications.
Eventually, she had to cut back to three days a week, a schedule she still finds difficult. “There are mornings when it’s really hard to get going, but I do my best to stay positive,” she says. “I move more slowly than other people, so I have to get up more than two hours before I need to leave the house if I’m going to make it to work on time.” Sabrina’s personal life suffered, too. She lost a lot of friends when she was diagnosed. “It was mostly my fault,” she says. “I didn’t really understand lupus, let alone how to explain it to others, so I just closed myself off.” Plus, at the time most of her friends wanted to go out drinking and dancing and Sabrina just didn’t have the stamina for typical twentysomething pursuits.
Although she had a lot of support from her family, it wasn’t quite enough. “They’ve been amazing, but they can’t really relate the way another person with lupus can,” she says. Sabrina started looking for connections and came across Lupus Ontario. Soon she was volunteering for fundraising events. “Then I started to think that they’ve helped me so much, maybe there’s more that I can do to give back.”
Since her hometown of London, Ont., didn’t have a support group, Sabrina started her own chapter. “It’s comforting to talk to people who understand what you’re going through, and we learn from each other’s experiences,” she says. “The people who come to the group support me as much as I support them.”
Sabrina took charge of her family life, too. “When I was told I couldn’t have children, I wondered if I should even get married, but I just couldn’t give up,” she says. Sabrina married her boyfriend, Jason, who’d been with her from the beginning. With the help of a lupus specialist who supported her decision to get pregnant, she had a baby. Sabrina was fortunate: She conceived when the disease was in remission and although her daughter arrived five weeks early (not uncommon for children of lupus patients), the baby was healthy. Sabrina credits Isobel, now three, with giving her the strength to keep going when the disease flares up. As for the future, Sabrina says she doesn’t think about it too much. “Tomorrow I might come out of remission and not be able to get out of bed, but I’m here now and that’s what counts.”