MS: A Silent Killer Of Women   no comments

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asilentkillerFor people like Barb Couves, a diagnosis of multiple sclerosis–or another of the 50-odd autoimmune diseases–spelled a lifetime of debilitating illness. Now, North American research is changing all that.

Three years ago, Barb Couves hit rock bottom. It was just after spring break in March 1995 when Couves, then 45, suffered her second major multiple sclerosis attack in eight months. “My right leg was so weak I couldn’t stand for long,” she says. Her speech was also affected and she felt so tired she could barely move. But the most devastating effect was on her attitude to life.

An elementary and junior high school teacher who lived with her husband and two teenagers in Olds, Alta., Couves had fought valiantly to cope with the terrifying array of stop-and-start symptoms that result when the body’s immune system starts destroying the insulating tissue in the brain and spinal cord. After her first attack on the ski slopes at age 34, she was given the standard drug treatments for her symptoms. But these did nothing to stop the relentless course of the disease.

“I had to kiss my career away,” says Couves, who hated the fact that she could no longer participate in the activities she loved. As her morale plummeted, her doctors and family worried about her emotional health. She recalls, “I was at the point where I was simply sitting in the living room. I was just done in.”

Then Dr. Bill Murphy, the specialist who was treating her at the multiple sclerosis clinic at Calgary General Hospital, suggested that she try a new genetically engineered drug called Betaseron, which had shown promising results in clinical trials. “I knew almost immediately that something positive was happening in my body,” she recalls. Doctors cautioned her not to be overly optimistic. But since she started taking the drug almost three years ago, Couves hasn’t had a single major attack.

Betaseron is no miracle cure. It does not eliminate baseline symptoms between relapses, such as fatigue or impaired movement The drug has not enabled Couves to ski or play basketball, as she used to do; these days, recreation means riding around on the back ofher husband’s motorcycle. But it seems to have stabilized her symptoms, got her off the roller coaster of sudden debilitating attacks and given her back some strength. “It has enabled me to keep going, even though I know it’s not a cure.”

Barb Couves is one of about 50,000 North Americans who have multiple sclerosis (MS), the most common neurological disease affecting young adults. She’s also at the centre of a North American research success story–one that has special significance for women. Almost twice as many women as men develop MS and the disease is most commonly diagnosed in women of reproductive age. (Couves’s sister, Patricia Deibert, was diagnosed with MS in her early 40s.)

For the longest time, MS and the 50-odd diseases that come under the autoimmune umbrella have been considered intractable–chronic, debilitating and sometimes fatal. The best known are MS, rheumatoid arthritis, lupus, juvenile diabetes, Crohn’s disease, ulcerative colitis, thyroid disease and scleroderma. The common link is that the body’s immune system gets confused and begins to attack normal healthy tissues.

Now, for the first time, research is unraveling the complexities of these mysterious illnesses. The new tools of biotechnology, coupled with this exploding knowledge, are leading to more effective treatments for the two million North Americans–including at least 1.4 million women–who stiffer from their effects.

Canada has one of the highest rates of MS in the world. R is also at the forefront of MS treatment and research, in large part due to a network of 15 MS clinics in hospitals from coast to coast. Since the network was established in the mid-1970s, MS specialists have collected and pooled an immense amount of detailed information about this population of patients. This collaboration has yielded a new understanding of the genetic basis of MS (see “MS: the DNAlink,” below) and successful testing of the first therapies to alter the natural course of the disease.

Scientists, like the businesspeople who fund them, want to be where the action is. And progress that has already been made in fighting MS has attracted talented researchers and critical research dollars. “We now know this is a disease we can alter and do something about. It’s sparked a lot of interest in MS research,” says Dr. Luanne Metz, a neurologist and director of the MS clinic at Foothills Medical Centre in Calgary. “Many drug companies are looking for something and they are spending millions of dollars.” In late August, for example, researchers announced that Betaseron–the biotech drug that worked for Barb Couves–offered even more potential than first thought. For the first time ever, a clinical trial showed that symptoms could be delayed in patients with a more advanced stage of the disease. This means the drug may postpone the need for a wheelchair.

But the power of the MS story goes beyond the disease itself. As scientists have learned more about the immune system and the autoimmune disease process, other disorders that were intractable have started to become treatable. Some of the most promising breakthroughs have occurred in treating rheumatoid arthritis, where genetically engineered drugs are being prescribed to selectively target the immune hormones involved in that disease (see “Rheumatoid arthritis: breaking a killer grip,” page 106). The selective approach that is being used for MS and rheumatoid arthritis is a model that researchers believe will ultimately lead to new, more effective treatments for other autoimmune diseases.

Until recently, the best that modern medicine had to offer people with MS and its autoimmune cousins was powerful immunosuppressive drugs such as prednisone (a form of cortisone). Although these drugs are still used to manage attacks and treat specific symptoms, they do nothing to affect the natural progression of the disease. They act globally to dampen an overactive immune system, making patients more susceptible to infection and causing many other serious side effects, such as fluid retention and hyperactivity. “You take out the good guys, along with the bad guys,” says Dr. Edward Keystone, a rheumatologist with a special interest in autoimmune diseases at Mount Sinai Hospital in Toronto.

The new approaches target specific parts of the immune system that are involved in a particular disease. “Instead of carpet-bombing the whole system, we are using guided missiles to make a single surgical strike,” says Dr. Keystone. In the case of MS, Betaseron is a form of interferon that targets the immune system’s T-cells. The drug appears to block the T-cells from crossing the blood-brain barrier and attacking myelin, the fatty protein sheath that insulates the nerves. (It’s the breakdown of myelin that leads to MS symptoms.) Although scientists do not yet fully understand how these drugs work, MS patients, doctors and nurses know that they do. “We’re offering patients something for the disease for the first time ever. It gives them hope for the future. The whole atmosphere of MS is more positive,” says Colleen Harris, coordinator of the Foothills MS clinic and a nurse who has been working on the front lines with MS patients for the past 13 years.

Nearly 400 North American patients participated in the first clinical trials for Betaseron, which began in 1990 at MS clinics in Vancouver, Montreal and London. Results of the five-year trial showed that Betaseron reduced the frequency of severe attacks by one-third and lessened the severity of attacks, compared with patients on placebos. The trial also showed that patients treated with Betaseron had fewer new MS lesions in the brain, measured by magnetic resonance imaging (MRI) scans.

Betaseron was the first of the new MS drugs to be experimentally tested and then approved for use in Canada in July 1995. Last September, Health Canada approved Copaxone, a second MS drug that blocks areas on the immune cells so that they cannot attack myelin. Two more new drugs, Avonex and Rebif, which are similar to Betaseron, were approved for use in Canada in the spring of 1998. Following successful clinical trials announced in August, Health Canada is now conducting a fast-track review of Betaseron for use in patients with secondary-progressive MS, a more advanced form of the disease.

So far, patients with relapsing-remitting MS have benefited most Between 30 and 40 percent of MS patients suffer from this form of the disease, which is characterized by periodic acute attacks followed by stretches that may be relatively symptom-free.

Not all patients with relapsing-remitting MS meet the strict criteria for these new drugs, says Deanna Groetzinger of the Multiple Sclerosis Society of Canada. In many cases, patients may not qualify because either their symptoms are too mild or the disability is too severe (they can’t walk). This makes early diagnosis and intervention all the more important, since patients in the early stages of MS can benefit most from Betaseron’s potential. Fortunately, broader use of MRI screening and other tools has led to much quicker diagnosis for patients referred to MS clinics.

Cost is another big barrier for some patients. Couves is fortunate that her teacher’s benefit plan covers the cost of Betaseron, which runs to $18,000 a year. Provincial health care plans in Alberta, New Brunswick and Prince Edward Island don’t pay for Betaseron now. “About 500 more patients in Alberta would be treated with Betaseron or Copaxone in the first year, if funding were available,” says Dr. Metz, who recently made several appeals to the Alberta government to cover these drugs.

Side effects can be a problem too. Although the flulike symptoms associated with Betaseron are generally less severe than the side effects of prednisone, for example, some patients go off the drug because they can’t tolerate the headaches and flulike symptoms. But now MS clinics can offer patients several new drugs that may have fewer side effects.

The demand for drug treatments and other services has grown rapidly as North American MS clinics have had more to offer patients. “The major advance in diagnosis has been MRI,” says Dr. Metz. Patients in Calgary first got ready access to MRI in 1990. Since that time, the number of MS patients registered at the clinic has increased from 1,600 to 2,800. Drugs are only part of the equation, as clinical nurses and rehab staff who specialize in MS help patients and their families to manage symptoms, and be as active as possible in their work and family lives.

Many patients, like Barb Couves and her sister, Patricia Deibert, still derive much of their support from family and friends. “We are very open and talk about everything,” says Deibert. “If I’m sitting and having a good cry, my family knows.” She’s gained comfort from their mother and from their father, a retired minister. “My parents have been wonderful. It must be difficult to have two children with MS.”

The two sisters have supported each other whenever one of them was going through a crisis or feeling down. “My sister has been the best. I have had three bad attacks where I had to go on steroids. She had been through it all. She gave me encouragement that it would get better.”

Meanwhile, her younger sister has had to accept giving up some of her dreams. “When we retire, my husband and I were planning to go bicycling across Canada and up to Alaska,” recalls Couves. “There are some things you can’t do. My husband and kids have been marvelous. We are taking it one step at a time.” This summer, Couves rode on the back of her husband’s motorcycle to Vancouver. It’s not the cross-Canada bicycle trip they had planned. But to Barb Couves and others with MS, ifs proof of a North American research success story that’s still unfolding.

MS: the DNA link

Like many MS patients, Barb Couves wondered whether MS ran in families. She got her answer, sadly, when her older sister, Patricia Deibert, now 52, was diagnosed with MS in 1989. Deibert, who lives in Saskatoon with her husband, daughter, 24, and son, 21, is a professional musician who plays at her local church. Her first attack was mystifying–and terrifying. “I got home after playing and one whole side of me was numb. I had difficulty hitting notes on the piano. I didn’t think about MS at all–I thought it was a stroke. By that night I had difficulty walking. I had to hold on to things. A few days later I was fine.”

In 1992, doctors at the MS clinic in Saskatoon asked Deibert whether she, her sister and their parents would participate in a national genetic research study. The lead researchers, Dr. George Ebers of the London clinic and Dessa Sadovnick of the Vancouver clinic, screened 18,000 North American patients and found about 2,000 families in which more than one family member had MS. Fifteen MS clinics across Canada collected DNA from these families for this study, which has led to key breakthroughs in understanding the genetic basis of MS.

The study found a genetic basis for the fact that MS runs in families. Dr. Ebers and Sadovnick confirmed that the risk is about 3 to 4 percent that the child of a parent with MS will develop the disease–about 20 to 40 times greater than for the average person. A prospective mother or father with MS can now weigh this information in deciding whether or not to have children.

The researchers learned that susceptibility to MS results from a number of genes interacting, rather than a single gene. Their studies of twins also showed that not everyone who carries MS-susceptibility genes will develop the disease. There must also be an environmental trigger.

Dr. Ebers and Sadovnick are now trying to pinpoint the MS genes and identify the environmental factor or factors that may trigger the disease. The long-term hope is that identifying the specific genes and environmental risk factors will lead to new strategies for treating and perhaps preventing the disease.

Written by TheEditor on August 22nd, 2015

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