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

Jaime teaching Bruna to play the guitar.

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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.

Pop Culture

Artist uses AI to create ultra realistic portraits of celebrities who left us too soon

What would certain icons look like if nothing had happened to them?

Mercury would be 76 today.

Some icons have truly left this world too early. It’s a tragedy when anyone doesn’t make it to see old age, but when it happens to a well-known public figure, it’s like a bit of their art and legacy dies with them. What might Freddie Mercury have created if he were granted the gift of long life? Bruce Lee? Princess Diana?

Their futures might be mere musings of our imagination, but thanks to a lot of creativity (and a little tech) we can now get a glimpse into what these celebrities might have looked like when they were older.

Alper Yesiltas, an Istanbul-based lawyer and photographer, created a photography series titled “As If Nothing Happened,” which features eerily realistic portraits of long gone celebrities in their golden years. To make the images as real looking as possible, Yesiltas incorporated various photo editing programs such as Adobe Lightroom and VSCO, as well as the AI photo-enhancing software Remini.

“The hardest part of the creative process for me is making the image feel ‘real’ to me,” Yesiltas wrote about his passion project. “The moment I like the most is when I think the image in front of me looks as if it was taken by a photographer.”

Yesiltas’ meticulousness paid off, because the results are uncanny.

Along with each photo, Yesiltas writes a bittersweet message “wishing” how things might have gone differently … as if nothing happened.
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All images provided by Adewole Adamson

It begins with more inclusive conversations at a patient level

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Adewole Adamson, MD, of the University of Texas, Austin, aims to create more equity in health care by gathering data from more diverse populations by using artificial intelligence (AI), a type of machine learning. Dr. Adamson’s work is funded by the American Cancer Society (ACS), an organization committed to advancing health equity through research priorities, programs and services for groups who have been marginalized.

Melanoma became a particular focus for Dr. Adamson after meeting Avery Smith, who lost his wife—a Black woman—to the deadly disease.

melanoma,  melanoma for dark skin Avery Smith (left) and Adamson (sidenote)

This personal encounter, coupled with multiple conversations with Black dermatology patients, drove Dr. Adamson to a concerning discovery: as advanced as AI is at detecting possible skin cancers, it is heavily biased.

To understand this bias, it helps to first know how AI works in the early detection of skin cancer, which Dr. Adamson explains in his paper for the New England Journal of Medicine (paywall). The process uses computers that rely on sets of accumulated data to learn what healthy or unhealthy skin looks like and then create an algorithm to predict diagnoses based on those data sets.

This process, known as supervised learning, could lead to huge benefits in preventive care.

After all, early detection is key to better outcomes. The problem is that the data sets don’t include enough information about darker skin tones. As Adamson put it, “everything is viewed through a ‘white lens.’”

“If you don’t teach the algorithm with a diverse set of images, then that algorithm won’t work out in the public that is diverse,” writes Adamson in a study he co-wrote with Smith (according to a story in The Atlantic). “So there’s risk, then, for people with skin of color to fall through the cracks.”

Tragically, Smith’s wife was diagnosed with melanoma too late and paid the ultimate price for it. And she was not an anomaly—though the disease is more common for White patients, Black cancer patients are far more likely to be diagnosed at later stages, causing a notable disparity in survival rates between non-Hispanics whites (90%) and non-Hispanic blacks (66%).

As a computer scientist, Smith suspected this racial bias and reached out to Adamson, hoping a Black dermatologist would have more diverse data sets. Though Adamson didn’t have what Smith was initially looking for, this realization ignited a personal mission to investigate and reduce disparities.

Now, Adamson uses the knowledge gained through his years of research to help advance the fight for health equity. To him, that means not only gaining a wider array of data sets, but also having more conversations with patients to understand how socioeconomic status impacts the level and efficiency of care.

“At the end of the day, what matters most is how we help patients at the patient level,” Adamson told Upworthy. “And how can you do that without knowing exactly what barriers they face?”

american cancer society, skin cacner treatment"What matters most is how we help patients at the patient level."https://www.kellydavidsonstudio.com/

The American Cancer Society believes everyone deserves a fair and just opportunity to prevent, find, treat, and survive cancer—regardless of how much money they make, the color of their skin, their sexual orientation, gender identity, their disability status, or where they live. Inclusive tools and resources on the Health Equity section of their website can be found here. For more information about skin cancer, visit cancer.org/skincancer.

The mesmerizing lost art of darning knit fabric.

For most of human history, people had to make their own clothing by hand, and sewing skills were subsequently passed down from generation to generation. Because clothing was so time-consuming and labor-intensive to make, people also had to know how to repair clothing items that got torn or damaged in some way.

The invention of sewing and knitting machines changed the way we acquire clothing, and the skills people used to possess have largely gone by the wayside. If we get a hole in a sock nowadays, we toss it and replace it. Most of us have no idea how to darn a sock or fix a hole in any knit fabric. It's far easier for us to replace than to repair.

But there are still some among us who do have the skills to repair clothing in a way that makes it look like the rip, tear or hole never happened, and to watch them do it is mesmerizing.

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Joy

Nurse turns inappropriate things men say in the delivery room into ‘inspirational’ art

"Can you move to the birthing ball so I can sleep in the bed?"

Holly the delivery nurse.

After working six years as a labor and delivery nurse Holly, 30, has heard a lot of inappropriate remarks made by men while their partners are in labor. “Sometimes the moms think it’s funny—and if they think it’s funny, then I’ll laugh with them,” Holly told TODAY Parents. “But if they get upset, I’ll try to be the buffer. I’ll change the subject.”

Some of the comments are so wrong that she did something creative with them by turning them into “inspirational” quotes and setting them to “A Thousand Miles” by Vanessa Carlton on TikTok.

“Some partners are hard to live up to!” she jokingly captioned the video.

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