ms

In most ways, Jaime and Bruna are an average couple. They share a love of literature, writing and music. They enjoy spending time at the beach with their dog and 5-year-old son, Francisco. Bruna affectionately refers to Jaime as “Jota”—a nickname based on the letter J in Portuguese. They have a solid network of friends and family in their small, coastal Brazilian town.

But this husband and wife team also have something more unique in common—they both have multiple sclerosis.

Bruna and Jaime love spending time at the beach in their small Brazilian town.

Multiple sclerosis (MS) is a chronic disorder affecting more than 2.8 million people worldwide. With MS, the immune system attacks the central nervous system, primarily targeting myelin—a fatty substance that insulates nerves—which affects the way nerves conduct electrical impulses to and from the brain. Symptoms of MS can include blurred vision, weak limbs, tingling sensations, unsteadiness, memory problems and fatigue. It impacts more women than men and no one knows the exact cause.

Bruna was diagnosed with MS when she was only 14 years old after seeking medical attention for tingling in her arms.

“It was a little scary because my doctor didn’t say the name of the disease,” she says. “He wrote it on a piece of paper and passed it to my mom. It was very difficult, because I thought it must not be a good thing if he couldn’t speak it out loud.”

She looked up multiple sclerosis on the internet when she got home from that doctor’s appointment and came across a website with inaccurate information stating that people diagnosed with MS only have about 10 years to live.

“It was shocking,” she says. And it was wrong. Bruna is now 35 and living well with MS.

Jaime found out he had MS in 2012 at age 28, but instead of a shock, he says his diagnosis came as a relief. He’d been having trouble walking and running and experiencing weakness for a few years, so he was glad to finally have an explanation for what was happening with his body.

For both Bruna and Jaime, their diagnosis was their first contact with MS. “That was one of the reasons I started my blog,” says Bruna, “because I didn’t want anyone else to go through this situation.”

Jaime and Bruna actually met through Bruna’s blog. After he was diagnosed, Jaime began researching MS and came across posts Bruna had written about doing her doctoral studies while living with MS. Jaime was working on his master’s degree at the time and wanted to ask her questions about being in academia with a chronic disease. Soon, they were emailing every single day, sharing little details of their lives. Six months after their first email exchange, they finally met in person.

The years since have been filled with love, marriage, a child, mutual caregiving and advocacy for people with MS and other chronic diseases.

Despite the fact that we live in the information age, misconceptions about MS abound. In Brazil, the word “sclerosis” is incorrectly associated with dementia and old age. “People don’t understand how we both have ‘sclerosis’ and have a doctorate and have a child,” Bruna says. “They think that sclerosis is dementia.”

Having their son, Francisco, has prompted a lot of questions from people who don’t understand that disability doesn’t mean being completely limited in ability.

“When I was diagnosed, we believed—and science believed—that people with MS couldn’t have children, [that] it was not appropriate to have children with MS,” says Bruna. “But when we decided to have a kid, we were very passionate that we were capable of educating our child.”

“People don’t believe that we can be a mom and dad with chronic disease and disability,” she says. “But I think it’s difficult to be a mom and dad for everybody.”

Jaime with son Francisco.

Jaime says people will ask how they were able to conceive a child, assuming that his using a wheelchair meant that they were unable to have sex—one of the many erroneous assumptions about people with disabilities.

There’s a wide diversity in what MS looks like and what it means for a person’s abilities, and the spectrum is exemplified in Bruna and Jaime’s experiences.

Bruna has relapsing remitting MS (RRMS), which is the most common type of MS. (About 85% of people with MS are initially diagnosed with RRMS.) Though symptoms can come and go, for the most part, Bruna can live and function as most people without MS would.

Jaime, on the other hand, has primary progressive MS (PPMS), where individuals experience a steady worsening of symptoms from onset without periodic relapses and remissions. Jaime has progressively lost function since his diagnosis. Today he is quadriplegic and his ability to speak has been hampered. Bruna serves as Jaime’s primary caregiver, but they also get a lot of help from friends and family that live nearby.

Knowing how vital it is to have such support, Bruna and Jaime have worked hard to create a community for people with chronic disease. Bruna serves as vice president of an MS advocacy group called Amigos Múltiplos pela Esclerose—“Multiple Friends of Sclerosis”—which provides information and support for people with MS and their loved ones. She also works as general manager of Chronical Day by Day (CDD), a patient association that provides reliable, accurate information about health, access and quality of life for people with chronic diseases.

Bruna with son Francisco.

“We have to create some stories and narratives so that it’s not the end of life—it’s a different way of life,” Bruna says. “We can live in a good way, even if we have a disease like MS.”

Bruna shares that having MS herself has made her a more respectful caregiver for Jaime. She says Jaime acts as her caregiver as well—it just looks different. For instance, he’s been teaching her to play the guitar, even though he’s not able to play himself anymore. She pushes him to do the things he can still do. They both refuse to see themselves as victims.

Jaime (right) teaches Bruna (left) to play the guitar. Jaime taught guitar lessons prior to becoming quadriplegic.

Bruna says people often write to them after a diagnosis and ask if they can have a normal life, and they always say that it’s a process to learn about their new body, and everything will change, but life with MS can be good. “It can be better than it was,” she says.

The biggest thing Bruna and Jaime want people to know is that having MS doesn’t mean they can’t have a full life; it is simply a part of their life.

“A diagnosis of MS or any other diagnosis doesn’t define us,” says Bruna. “It’s part of who we became, but it’s not what we are.”

May 30 is World MS Day. To learn about how to get involved, visit https://worldmsday.org/.

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This article was sponsored by Sanofi. Jaime and Bruna were compensated for their participation in the development of this article.