[5 MIN READ]
Multiple sclerosis is a neurological disease that attacks the immune and central nervous systems.
April marks the 10th anniversary of the Swedish MS Center, the country's largest and most comprehensive MS treatment center.
The center was launched 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. In 2009, that understanding was the driving force behind the founding of the MS Center at the Swedish Neuroscience Institute. Over a 3-year period our current comprehensive center space was designed and built. This year the Swedish MS Center celebrates the 10th anniversary or our beautiful center space, and with it, a decade of providing world-class care to patients with MS and spearheading visionary research around the disease.
With an effort led by the Swedish Foundation, the MS Center was launched 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 largest and most comprehensive in the country and contributes to groundbreaking scientific advancements around 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 this milestone we spoke with James Bowen, M.D., medical director of the MS Center about the accomplishments of the last 10 years, how treatments have evolved and where MS care and research are leading us.
James Bowen, M.D., founder and medical director of the Swedish MS Center, the nation's largest and most comprehensive treatment center for multiple sclerosis.
Tell us a little bit about MS. What causes it? What defines it? Who gets it? What do we know about 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 that attacks the immune system and central nervous system—that’s the brain, the eyes and the spinal cord. MS attacks are recurrent and occur at random locations and times.
Every person with MS has a different set of symptoms, because it depends 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.
Who gets it? Peak ages 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, 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 about1 percent; a daughter would be about 4 percent.
What causes it? We don’t fully understand this yet; there’s 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. We don’t really understand fully what the cause of that is right now.
Get Your Music Back participants at the Swedish MS Center. The program is for musicians who have been affected by MS.
What strides have we made in MS treatment?
When I first got into this field in 1987, there were no treatments: now there are 18. 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 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 neuro-psychiatrist 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 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 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.
The Swedish MS Center's Adventure Program provides opportunities for patients to participate in a wide variety of outdoor activities, including skiing.
What are some of the priorities for the future of the center?
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 gotten. 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 like to expand our research program, which has a strong history. Of the 18 drugs currently on the market to treat MS, we were involved in studies of 13 of those medications. We also want to continue to expand our patient base. We just added our fourth neurologist this year. And as we continue to grow, we're going to have to expand our clinical personnel to meet the need.
It's amazing how quickly 10 years have gone. Once we started down this path, it was just phenomenal how fast the community stepped up to help us to make this dream a reality.
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