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25 Boston Marathons Later: Why Multiple Sclerosis Has Failed to Stop This Runner

For Jan Fuller, 72, the finish line is familiar territory. She has completed 38 marathons—most of them while living with multiple sclerosis (MS).

Jan started running in high school. In her late 30s, she ran her first road race. Her first marathon followed soon thereafter. By this point, running was a major part of her identity.

Then came the MS diagnosis. Naturally, she worried about the impact this might have on her running and overall quality of life. But thanks to her personal commitment—and the expert care she has received at Mass General Brigham Neuroscience Institute—she has thrived on and off the road.

“Learning you have MS can feel like a stop sign, but it doesn’t have to be,” Jan said. “Let it be a speed bump instead. It might slow you down for awhile, but most patients manage to have a good, functional life. The outlook is far more optimistic than it was 30 years ago.”

‘It was soul-crushing’

The first hint something was wrong came around age 39. Jan woke up one morning experiencing numbness from the soles of her feet up to her hips. After visiting a local neurologist, she ended up spending four days in a hospital and undergoing an array of tests. The results were inconclusive. Within about six weeks, the symptoms went away.

A year later, the same symptoms came back. This time, a battery of tests found that she likely had MS. This is a chronic autoimmune disorder (meaning the body attacks itself by mistake) that causes neurologic damage.

“My local neurologist said, ‘You have MS, so you have to stop running,’” Jan recalled. “It was soul-crushing.”

Jan decided to pursue her neurologic care elsewhere. Her primary care doctor referred her to the Mass General Brigham Multiple Sclerosis Program. A neurologist there confirmed the MS diagnosis.

“At the time, there was a public service announcement running on TV. It showed an empty wheelchair spotlighted against a black background with the tagline, ‘MS, the Crippler of Young Adults,’” she said. “I thought that wheelchair was my future.”

She quickly learned that her new neurologist had a very different vision. Noting that Jan had already finished a few marathons, he encouraged her to continue running. “He told me, ‘As long as it’s safe—as long as you can feel your feet and legs—then keep moving,’” she said.

Jan did just that. The next year, she ran her first Boston Marathon to raise money for the National Multiple Sclerosis Society.

A diagnosis of lupus

Two years after her MS diagnosis, Jan was found to be severely anemic (having too few red blood cells or hemoglobin to carry oxygen to the body’s tissues). A hematologist subsequently diagnosed her with lupus, another autoimmune disease.

Jan had previously been on an MS medication for about a year. Now she was switched to an oral immunosuppressant (a drug that controls the immune system) to treat the lupus. Since both MS and lupus are autoimmune disorders, they sometimes respond to the same drug.

For many years, Jan continued seeing her neurologist at Mass General Brigham. After he retired, she transitioned to neurologist Eric Klawiter, MD, who specializes in treating MS and related diseases.

“I knew he was a runner and an athlete, so I thought he’d support my desire to stay active,” Jan said. “I’ve been seeing him for seven years now, and it’s been a great choice.”

Dr. Klawiter has been caring for patients with MS at Mass General Brigham since 2010. Over that period, he has witnessed huge strides in the treatment options available for MS.

“When I was training as a fellow, we had three main treatments for MS. Now we have more than 20 approved treatments, many of which are highly effective,” he said. “Once we start treatment, we can do a really good job of subduing the inflammation and preventing long-term disability.”

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Multidisciplinary care makes a difference

Caring for Jan has been a team effort. In addition to Dr. Klawiter, she regularly sees rheumatologist Eli Miloslavsky, MD, who manages her lupus and monitors her immunosuppressant treatment. Endocrinologist Marc Wein, MD, PhD, meanwhile, manages her osteoporosis, a common complication of the steroid treatments that she periodically receives.

A couple years ago, Jan was struggling with a degenerative spine disease that was causing significant pain and making it hard to stay active. Mass General Brigham specialists in neurology, neurosurgery, and physical medicine and rehabilitation collaborated to manage the condition successfully with a steroid injection rather than resorting to surgery.

“Jan’s case is a great example of expertise across multiple subspecialties enhancing her quality of care,” Dr. Klawiter said. “We’re always striving to bring disciplines together to address all of a patient’s needs.”

Since being diagnosed with lupus, Jan has been on a series of immunosuppressants that have helped control lupus- and MS-related symptoms. By allowing her to keep moving, these drugs have produced further benefits.

“We recommend exercise to maintain strength, but it also has lots of secondary effects,” Dr. Klawiter said. “Exercise is a natural and effective way to prevent mood difficulties and fatigue, both of which are common with MS.”

Jan completed the Boston Marathon 24 straight years before taking off 2019 (broken kneecap) and returning one last time in 2020. Although her marathon days are behind her, she still walks three to five miles a day and regularly hikes.

Advice for others living with MS

Today, life is good for Jan. She and her husband of nearly a half-century, Tom, live in Woburn, their home for 41 years. They enjoy traveling as well as spending time with their two adult children and three grandchildren. When not exercising, Jan can often be found with members of Sit and Sew Sisters, a quilting club, or volunteering with the National MS Society.

Since Jan’s condition has been stable for so long, she typically sees Dr. Klawiter and Dr. Miloslavsky each only once a year. Occasional MRI scans help her care team watch for any signs of disease progression.

Jan maintains that the care she has received at Mass General Brigham has enabled her not only to run all those marathons but also to experience smaller pleasures, like chasing her grandkids on the soccer pitch or teaching them how to ride a bike. She wants to make sure more people with MS live life to its fullest.

“When I meet someone with MS,” she noted, “I say, ‘If your MS lets you walk a mile, you should walk a mile. If your MS lets you run a marathon, you should try to run a marathon. And if your MS lets you walk around the main floor of your house, you should be doing that. Be as active as you can be within your disease.’”

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