• March is Multiple Sclerosis (MS) Awareness month.
• MS is a neurological disease where the immune system attacks the central nervous systems.
• Swedish is home to one of the country’s largest and most comprehensive MS treatment centers.
• The center was launched in 2009 with philanthropic support from the community and provides world-class care through groundbreaking treatment and research programs.
The Pacific Northwest is believed to have one of the highest rates of multiple sclerosis (MS) in the world. That understanding was the driving force behind the founding of the Swedish MS Center at the Swedish Neuroscience Institute. For over a decade, Swedish’s MS Center has provided MS patients with world-class care in a state-of-the art space and spearheaded visionary research on the disease.
Through an effort led by the Swedish Foundation, the MS Center was launched in 2009 with philanthropic support from the community. Given the effects of MS on so many patients right here in our region, it was fitting that the community rallied to provide such an excellent center of care.
Swedish’s MS Center is the most comprehensive and one of the largest in the country and contributes to groundbreaking scientific advancements of MS treatment and clinical care. Programs include music therapy, mat and chair Pilates, gentle yoga and wellness, and outdoor adaptive adventure activities, including skiing, skydiving and kayaking.
Because MS can be life-altering and isolating, the center’s work is guided by a multidisciplinary, holistic approach designed to support patients (and their families) in every area of life. Whether it’s navigating complex clinical treatments or managing the effects of MS on patients’ personal and professional lives, the center and its caregivers are dedicated to keeping patients engaged, active and supported throughout their experience with MS.
To mark MS Awareness Month, which we recognize every March, we spoke with James Bowen, M.D., medical director of Swedish’s MS Center, about MS, how treatments have evolved and where MS care and research are leading us.
Medical Director of the Swedish MS Center, Dr. James Bowen
What do we know about MS? Who gets it and what causes it?
Unfortunately, right now, we don't know the answer to most of those questions. But we do know that MS is a neurologic disease where the immune system attacks the central nervous system — that’s the brain, the eyes and the spinal cord. MS attacks recur at random locations in the nervous system and at random times.
Every person with MS has a different set of symptoms, because symptoms depend on where the different attacks land within their nervous system. It probably has the most symptoms of any single disease that we deal with in medicine, which makes it very complicated to treat because everybody’s got different symptoms at different times.
Peak ages for diagnosis are 20 to 50, but the tails on that bell curve are quite broad, and people can be diagnosed at five years old and younger, sometimes. Some people come down with it later in life — in their 60s and 70s.
It also hits women harder; three-quarters of cases are female. We used to say that MS affected White people more often than Black people; we also thought that MS occurred more often in Black patient populations than in Asian patient populations. But it turns out that in recent years, rate of MS in minority groups are catching up, and in some cases have completely caught up with White patient populations.
There’s also a slight genetic component to MS; there’s a greater chance that a patient’s offspring might get it, but it’s not inherited like typical genetic diseases. There’s just a slight increase in risk, so if a parent has MS, the risk of a son getting MS is about 1 percent; a daughter would be about 4 percent.
We don’t fully understand what causes it yet. As I mentioned, there is a little bit of genetic risk, but then there is also something in the environment setting this off and causing the immune system to attack the brain.
What strides have we made in MS treatment?
When I first got into this field in 1987, there were no treatments. Now there are nineteen. That really reflects our better understanding of the immunology underlying this disease and our ability to manipulate it with various medications. That’s been a huge step forward.
We still don’t know how to put these pieces together, but geographic differences, the realization it’s more common in women and racial differences in the disease have led us to think it’s autoimmune. The curious thing is in the last couple of decades or so we've realized that geographic prevalence is changing.
It’s holding steady in the north and increasing in more southern areas. We also know that 100 years ago, those affected by MS were three-quarters male; now it's three-quarters female. And then we have the racial makeup of patients with MS rapidly changing, as I mentioned earlier, so all these understandings have provided important clues as to what causes the disease, but we don't have the answer.
What makes the Swedish MS Center the nation’s most comprehensive?
Patients often have mobility limitations, so we felt it was important to make it as close as we can get to one-stop shopping. We have most of our services right here on one floor. We have traditional neurology care for patients, and now have four MS specialty physicians. All we treat is MS. We also have one of a handful of MS specialty trained rehabilitation doctors in the country. We have developed expertise that's not available at a lot of general neurology clinics.
We also offer other ancillary medical services, including neuro-ophthalmology. Rehabilitation psychology deals with family conflict issues and depression and anxiety. A lot of those psychological issues become more noticeable when you’re dealing with a chronic disease, especially one like MS. We also have a neuropsychologist who specializes in cognitive problems and a neuropsychiatrist for medication treatment of psychiatric complications of MS.
And then beyond that, we get into wellness. The emotional wellness program includes our psychology components and other support services. For physical wellness, we have a rehabilitation doctor, as well as a physical therapist and occupational therapist and our own MS gym for those therapists to work in.
Another piece is community wellness, which includes a social worker who helps patients with counseling if needed, and who also tries to get people community resources they need, which helps keep people engaged in their community, their work and their families. Our vocational counselor assists people in maintaining employment.
We also offer a lot of activities that I don't know how to classify into one of those buckets, including Pilates, yoga, music therapy, a book club, creative writing groups and a movie club. We also have several support groups. We host workshops covering things like fatigue, pain and anxiety management.
And then we have our Adventure Program, which is truly unique. Our occupational therapist, Simon Gale, is our adventure guide who organizes field trips to get people with MS involved in fun parts of life that often fall by the wayside when you’re dealing with a chronic illness. He takes groups cross-country and downhill skiing, kayaking, parasailing and camping. He also organizes trips to the theater and sporting events! He also incorporates nutrition education, like taking groups on shopping trips to grocery stores with a nutritionist. I don’t think there’s any MS center in the world with a program like this.
“Life with MS: Different Stages of the Journey” is a theme for this year’s MS Month. How does the Center support MS patients in getting the appropriate treatment and maintaining healthy habits through the stages of life?
MS is a chronic disease, affecting patients from the time of their diagnosis and for decades afterwards. During those decades, our patients are going through many stages of life, often from teenagers, to young adults, marriage, having children, stages of their careers, retirement and aging. These life changes can be stressful enough, but then additional challenges are added from a chronic disease with an unpredictable course.
Our team works closely together to address many of the unique challenges of our patients with MS. This includes the initial diagnosis and decisions about treatment. When I first entered the field of MS care, there were no medications to stabilize the disease. We now have nineteen disease-modifying therapies available, and these have made a huge difference. Unfortunately, there is still no cure for the disease, so the earlier we begin treatment the better the outcome.
We also have to use our comprehensive team to assist with the emotional challenges of life with a chronic illness. Physical challenges are addressed by our rehabilitation component, including physical and occupational therapies. We also try to help patients establish or maintain their community connections with our various programs to keep them engaged in life activities. These often do more to help them maintain their dignity, sense of worth and enjoy life than our traditional medical treatments.
Since MS is a relatively rare disease, it is important to work with a medical team that is familiar with all of the options available for care. It is also helpful to maintain a healthy lifestyle, particularly related to exercise, emotional support and participation in community activities.
What are some priorities for the Center as we emerge from the pandemic?
Many of our programs had to pivot to on-line during the pandemic. In March, most of these are returning to in-person events. We are also continuing an on-line hybrid for many of our programs so that patients from outside our immediate area can also participate. There are always new activities going on, that are easiest to keep up on through our electronic newsletter. For example, in March we will have indoor skydiving and Sounders tickets.
We want to, of course, continue with what we’ve built so far and develop resources to make this perpetual. We’ve done a really good job with that. We’ve been very good stewards of the philanthropic support we’ve received. Eventually, we’d like to endow those supportive care services for MS that are not reimbursed and are possible only with philanthropy so they will always be available to our patients.
We’d also want to continue growth and support for our robust research program, which has a strong history. We usually conduct about thirty studies at a time. And of the nineteen treatments currently on the market to treat MS, we were involved in studies of fourteen of those medications. We also want to continue to expand our patient base. Last year, we added our fourth neurologist to the team. And as we continue to grow, we're going to have to expand our clinical personnel to meet the need.
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