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They met over a shared diagnosis. Their love shows what’s possible for people with multiple sclerosis.

“A diagnosis of MS or any other diagnosis doesn’t define us.”

They met over a shared diagnosis. Their love shows what’s possible for people with multiple sclerosis.

Jaime teaching Bruna to play the guitar.

True

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/.


MAT-GLB-2201776-v1.0-05/2022

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

Identity

Celebrate International Women's Day with these stunning photos of female leaders changing the world

The portraits, taken by acclaimed photographer Nigel Barker, are part of CARE's "She Leads the World" campaign.

Images provided by CARE

Kadiatu (left), Zainab (right)

True

Women are breaking down barriers every day. They are transforming the world into a more equitable place with every scientific discovery, athletic feat, social justice reform, artistic endeavor, leadership role, and community outreach project.

And while these breakthroughs are happening all the time, International Women’s Day (Mar 8) is when we can all take time to acknowledge the collective progress, and celebrate how “She Leads the World.

This year, CARE, a leading global humanitarian organization dedicated to empowering women and girls, is celebrating International Women’s Day through the power of portraiture. CARE partnered with high-profile photographer Nigel Barker, best known for his work on “America’s Next Top Model,” to capture breathtaking images of seven remarkable women who have prevailed over countless obstacles to become leaders within their communities.

“Mabinty, Isatu, Adama, and Kadiatu represent so many women around the world overcoming incredible obstacles to lead their communities,” said Michelle Nunn, President and CEO of CARE USA.

Barker’s bold portraits, as part of CARE’s “She Leads The World” campaign, not only elevate each woman’s story, but also shine a spotlight on how CARE programs helped them get to where they are today.

About the women:

Mabinty

international womens day, care.org

Mabinty is a businesswoman and a member of a CARE savings circle along with a group of other women. She buys and sells groundnuts, rice, and fuel. She and her husband have created such a successful enterprise that Mabinty volunteers her time as a teacher in the local school. She was the first woman to teach there, prompting a second woman to do so. Her fellow teachers and students look up to Mabinty as the leader and educator she is.

Kadiatu

international womens day, care.org

Kadiatu supports herself through a small business selling food. She also volunteers at a health clinic in the neighboring village where she is a nursing student. She tests for malaria, works with infants, and joins her fellow staff in dancing and singing with the women who visit the clinic. She aspires to become a full-time nurse so she can treat and cure people. Today, she leads by example and with ambition.

Isatu

international womens day, care.org

When Isatu was three months pregnant, her husband left her, seeking his fortune in the gold mines. Now Isatu makes her own way, buying and selling food to support her four children. It is a struggle, but Isatu is determined to be a part of her community and a provider for her kids. A single mother of four is nothing if not a leader.

Zainab

international womens day, care.org

Zainab is the Nurse in Charge at the Maternal Child Health Outpost in her community. She is the only nurse in the surrounding area, and so she is responsible for the pre-natal health of the community’s mothers-to-be and for the safe delivery of their babies. In a country with one of the world’s worst maternal death rates, Zainab has not lost a single mother. The community rallies around Zainab and the work she does. She describes the women who visit the clinic as sisters. That feeling is clearly mutual.

Adama

international womens day, care.org

Adama is something few women are - a kehkeh driver. A kehkeh is a three-wheeled motorcycle taxi, known elsewhere as a tuktuk. Working in the Kissy neighborhood of Freetown, Adama is the primary breadwinner for her family, including her son. She keeps her riders safe in other ways, too, by selling condoms. With HIV threatening to increase its spread, this is a vital service to the community.

Ya Yaebo

international womens day, care.org

“Ya” is a term of respect for older, accomplished women. Ya Yaebo has earned that title as head of her local farmers group. But there is much more than that. She started as a Village Savings and Loan Association member and began putting money into her business. There is the groundnut farm, her team buys and sells rice, and own their own oil processing machine. They even supply seeds to the Ministry of Agriculture. She has used her success to the benefit of people in need in her community and is a vocal advocate for educating girls, not having gone beyond grade seven herself.

On Monday, March 4, CARE will host an exhibition of photography in New York City featuring these portraits, kicking off the multi-day “She Leads the World Campaign.

Learn more, view the portraits, and join CARE’s International Women's Day "She Leads the World" celebration at CARE.org/sheleads.


Health

Over or under? Surprisingly, there actually is a 'correct' way to hang a toilet paper roll.

Let's settle this silly-but-surprisingly-heated debate once and for all.

Elya/Wikimedia Commons

Should you hang the toilet paper roll over or under?



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Pets

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Photo by Beyzaa Yurtkuran on Pexels and Photo by Mariano Mollo on Unsplash

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