After an early diagnosis, Marisa Twarowski learns about 'becoming a fighter'
The elbow to her nose might have been the best thing to happen to Marisa Twarowski.
She was 13 years old, playing in a championship match for her Roseburg, Oregon, soccer club, when an opposing player accidentally took her down.
Dizzy, she walked off the field and left the game. But for weeks afterward, Marisa felt the effects of the hit, including light sensitivity and extreme chills.
Six weeks later, in part so she could be cleared to play in regional championships, Marisa’s mother, Tina Twarowski, took her to a Eugene hospital for an MRI (magnetic resonance imaging) brain scan.
A few days later, their doctor called Tina.
“I just got the results from her MRI,” Tina remembers him saying. “I don’t like them. It just doesn’t seem right.”
The scan showed white spots throughout Marisa’s brain. Her doctor referred Marisa to OHSU. Dr. Vijayshree Yadav, director of the Multiple Sclerosis Center, evaluated Marisa and looked at the results of a new MRI.
Her diagnosis: Marisa had a condition called radiological isolated syndrome. It can be an early sign of multiple sclerosis and is diagnosed in people who have yet to show MS symptoms.
Eventually, Marisa’s MS diagnosis became official. Her family was devastated.
“I usually take things on without a problem, but this was my baby girl,” Tina says. “My very athletic, straight-A student.”
She “did quite a bit of crying,” she says, but was more focused on fighting for Marisa.
“She was always like, ‘Don’t stop, don’t stop, don’t stop. You push yourself to be the best you can be.’”
— Marisa Twarowski, describing encouragement from OHSU’s Dr. Vijayshree Yadav
Tina had plenty of reasons to be concerned. MS is a chronic condition that affects the brain and spinal cord. Over time, it can lead to difficulty with vision, movement, muscle strength, coordination and thinking. It’s rare in children, but some studies estimate that up to 5 percent of people with MS have symptoms before age 18.
There was good news for Marisa, though. That elbow on the soccer field meant doctors knew about her condition much earlier than they would have otherwise. And Yadav — who Marisa and her mother say was an anchor of optimism in the years to come — was sure that OHSU could manage Marisa’s condition.
“Dr. Yadav kept saying that her goal was to ‘capture’ Marisa’s MS where it was,” Tina says. “Those were her words: ‘We’re going to capture it and not let it grow.’”
Controlling the disease early
In 2011, no one knew what might happen with Marisa’s MS. She has a type called relapsing-remitting MS, with attacks of neurologic problems followed by periods of recovery. These flare-ups can be intense, but Yadav was confident that the MS Center’s knowledge and expertise would benefit Marisa.
MS treatment had also improved dramatically — especially for relapsing-remitting MS — in the previous decade. Compared to when she began treating MS in 2001, “it’s like night and day,” Yadav says. If doctors catch relapsing-remitting MS early, as they did with Marisa, medication can slow or stop the disease’s progress.
But there were still challenges, and some worries, for Marisa along the way.
MS in children often is much more active than in adults. Brain lesions form quickly, and the flare-ups — with symptoms like vision problems, fatigue or difficulty with walking or balance — come more often.
“You have to be much more careful about controlling the disease early, or it can cause permanent damage to the brain,” Yadav says.
She prescribed a medication that Marisa and her parents could inject into her leg, and scheduled MRIs every six months.
Over the next few years, each new MRI showed new lesions. Marisa still showed no symptoms, but the changes in her brain were scary.
She also developed a needle phobia. It was “a wrestling match” each time Tina tried to inject the medication, Marisa recalls. “It was a nightmare.”
Yadav changed her prescription to a pill that she thought would more effectively fight the disease and avoid Marisa’s fear of needles.
Throughout middle school and most of high school, Marisa stayed symptom-free.
But the summer before her senior year, she had what felt like an ear infection, with some dizziness. Then she lost the ability to walk, and she couldn’t control the left side of her body.
It was her first MS flare-up. She ended up in a wheelchair for a week.
It was already a difficult time for Marisa. Her best friend had drowned in an accident a few weeks earlier. Stress can contribute to MS symptoms. Marisa and her mother believe that the stress and grief played a role in her flare-up.
Yadav prescribed a round of steroids to decrease inflammation. After two rocky months, Marisa improved. Since then, she has been treated with an IV medication called Tysabri.
Tysabri works by limiting the potential nerve cell damage that causes and worsens MS. Marisa travels to OHSU’s Center for Health & Healing once a month for the infusions, which usually take three or four hours.
She’s been symptom-free since starting Tysabri. And Marisa says she has transformed from a frightened 13-year-old into a confident young adult who actively manages her condition.
She follows a strict diet, avoiding inflammation-causing foods such as red meat, gluten and most dairy. She exercises to stay in top physical condition, which helps fight MS.
“A lot of the change of my mindset was because of Dr. Yadav,” Marisa says. “Every time we went in, she said: ‘There’s hope. You can do this, this and this.’ She was always like, ‘Don’t stop, don’t stop, don’t stop. You push yourself to be the best you can be.’”
Now Marisa is a senior at Regis University in Denver. She’s double majoring in psychology and education, and routinely makes the dean’s list.
She plays on the Regis lacrosse team, which made the NCAA Division II Women’s Lacrosse Final Four in both 2018 and 2019. And since entering college, she's run two half-marathons, placing first and third in her age division.
But some of Marisa’s best victories have come when she’s had periodic MRIs to check on her MS. Doctors have found no new lesions since she started college.
"No new or active lesions is a miracle in my book,” Marisa says. "I am not naive to the fact that things can change in the blink of an eye. But I am choosing to stay present and count my blessings!”
There are still scary moments, she says, like when she thinks about what MS could someday mean for her life. But she doesn’t dwell on it. Her faith in God helps. So does her belief that MS is another opponent she can beat.
“Your mind is so powerful,” she says. It’s all about “becoming a fighter — owning MS rather than letting it own you.”
— By Todd Murphy, a Portland medical writer and former media relations coordinator for the OHSU Brain Institute.
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