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Three women, three MS journeys: How multiple sclerosis looks different for everyone

Gina, Nathalie and Helga share their reactions to being diagnosed with MS and how they stay informed and positive in the face of ever-changing symptoms.

woman after swimming, woman holding medal in wheelchair, woman riding a horse
Courtesy of Sanofi

Helga, Nathalie and Gina all have MS, and their experiences show how differently the disease can manifest.

True

It’s been 155 years since neurologist Jean-Martin Charcot gave the first lecture on a mysterious progressive illness he called “multiple sclerosis.” Since then, we’ve learned a lot. We know MS causes the immune system to attack healthy tissue, including damaging the brain and spinal cord. Resulting symptoms can be debilitating and include fatigue, blurred vision, memory problems and weakness. Huge advancements in our understanding of MS and its underlying causes, as well as treatment advances, have been made in the past few decades, but MS remains a complex and unpredictable reality for the 2.8 million+ people diagnosed around the world.

Ironically, the only real constant for people living with MS is change. There’s no set pattern or standard progression of the disease, so each person’s experience is unique. Some people with MS have mild symptoms that worsen slowly but sometimes improve, while others can have severe symptoms that drastically alter their daily lives.

All people with MS share some things in common, however, such as the need to stay informed on the ever-evolving research, find various lines of support and try to remain hopeful as they continue living with the disease.

To better understand what navigating life with MS really looks like, three women shared their MS stories with us. Their journeys demonstrate how MS can look different for different people and interestingly, how the language used to talk about the disease can greatly impact how people understand their realities.

woman with horse, woman riding horseGina loves riding her horse, Benita.Courtesy of Sanofi

Gina—Hamburg, Germany (diagnosed with relapsing multiple sclerosis in 2017)

When her youngest son was 4 months old, Gina started having problems with her eye. She’d soon learn she was experiencing optic neuritis—her first symptom of MS.

“Immediately after the diagnosis, I looked up facts on MS because I didn’t know anything about it,” Gina says. “And as soon as I knew what could really happen with this disease, I actually got scared.”

As her family’s primary income provider, she worried about how MS would impact her ability to work as a writer and editor. Her family was afraid she was going to end up in a wheelchair. However, for now, Gina’s MS is managed well enough that she still works full-time and is able to be active.

“When I tell somebody that I have MS, they often don't believe me the first time because I don't fulfill any stereotypes,” she says.

Overwhelmed by negative perspectives on living with MS, Gina sought support in the online MS community, which she found to be much more positive.

“I think it’s important to use as many positive words as you can when talking about MS.” It’s important to be realistic while also conveying hope, she says. “MS is an insidious disease that can cause many bad symptoms…that can be frightening, and you can't gloss over it, either.”

To give back to the online community that helped her so much, Gina started a blog to share her story and help others trying to learn about their diagnosis.

Though she deals with fatigue and cognitive dysfunction sometimes, Gina stays active swimming, biking, riding horses and playing with her sons, who are now 11 and 6.

Cognitive dysfunction is common in MS, with over half of people affected. It can impact memory, attention, planning, and word-finding. As with many aspects of MS, some people experience mild changes, while others face more challenges.

Gina says that while there’s still a lot of education about MS needed, she feels positive about the future of MS because there’s so much research being done.

woman in wheelchair holding medal, woman rowingNathalie is an award-winning rower with multiple international titles.Courtesy of Sanofi

Nathalie — Pennes Mirabeau, France (diagnosed with relapsing-remitting multiple sclerosis in 2002)

Nathalie was a teenager and a competitive athlete when she noticed her first symptoms of MS, but it would take four years of “limbo” before she was diagnosed.

“Ultimately, the diagnosis was more of a relief, than a shock,” she says. “Because when you have signs and you don’t know why, it’s worse than knowing, in the end, what you have.”

However, learning more about the disease—and the realities of disease progression—scared her.

“That glimpse of the future was direct and traumatic,” she says. Her neurologist explained that the disease evolves differently for everyone, and her situation might end up being serious or very mild. So, she decided to stop comparing herself to others with MS.

She said to herself, “We’ll see what happens, and you’ll manage it bit by bit.”

By 2005, Nathalie’s MS had progressed to the point of needing a wheelchair. However, that has not dampened her competitive spirit.

Nathalie began her international rowing career in 2009 and has won multiple world titles, including two Paralympic medals—silver in London and bronze in Tokyo. Now, at 42, she still trains 11 times a week. Fatigue can be a problem, and sometimes hard workouts leave her with muscle stiffness and shaking, but she credits her ongoing sports career for helping her feel in tune with her body’s signals.

“Over the years, I’ve learned to listen to my body, letting my body guide when I need to stop and take breaks,” she says.

Nathalie explains that she used to only look backwards because of the initial shock of her diagnosis. In time, she stopped thinking about what she couldn’t do anymore and focused on her future. She now lives in the following mindset: “Even when doors close, don’t miss out on those that open.” Instead of focusing on what she can’t do, she focuses on the opportunities she still has. Right now, this includes her training for the 2024 Paralympic Games in Paris, where she will compete for another rowing medal.

“I only go forward,” she says. “Well, I try, anyway…It’s easy to say, it’s not always easy to do. But that’s what I try to do.”

woman exiting water after swimming, woman with great daneHelga's Great Dane has become a helpful and beloved companion.Courtesy of Sanofi

Helga—Johannesburg, South Africa (diagnosed with relapsing multiple sclerosis in 2010)

When Helga first started having balance issues and numbness in her feet, she chalked it up to her training as a runner. But when the numbness moved to her face, she knew something was wrong. She never guessed it was MS.

“When I was diagnosed, I felt completely overwhelmed and clueless,” Helga says. “I felt that I had nowhere near enough information. I did not know anything about the disease…I had no idea that it was going to be a process of continually monitoring and adjusting your lifestyle.”

In the beginning, Helga’s symptoms developed slowly, and she didn’t appear ill to others. She was even able to run for a few years after her diagnosis, but she couldn’t do marathons anymore, and she began to fall frequently due to balance issues and right-foot dragging. Then her cognition issues became more problematic, especially in her job as a trainer in a printing company.

“My executive function, decision-making and short-term memory were affected to the point that I was eventually medically unfit for work,” she says. She stopped working in 2017.

However, she didn’t stop living life. Even though she could no longer run, she continued to swim competitively. She got a Great Dane puppy and trained him as a service dog to help her walk. She also serves as vice chair of the patient support organization Multiple Sclerosis South Africa, and she advises others who have been diagnosed to join a patient advocacy group as soon as possible to get reliable information and meet others with MS.

Helga says she is “hopeful” about the future of MS. “I must say that I am so grateful that we have all the new medications available, because my life would not be the same if it wasn't for that,” she adds.

Part of how she manages her MS is by looking at the positives.

“If I could tell the world one thing about MS, it would be that MS is an incurable disease of the nervous system, but it's also the greatest teacher of valuing your health, family, friends, and managing change in your life,” she says. “My life is diversified in a way that I never, ever thought it would, and MS has been honestly the greatest teacher.”

Each MS journey is unique – with each person impacted experiencing different struggles, successes, and feelings as they manage this unpredictable disease. But the common thread is clear – there is a critical need for information, support, and hope. We are proud to participate in World MS Day and share these incredible stories of living life while living with MS. To learn more about MS, go to https://www.sanofi.com/why-words-really-matter-when-it-comes-to-multiple-sclerosis.

MAT-GLB-2301642-v1.0-05/2023

This article was sponsored by Sanofi. Participants were compensated when applicable.

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.


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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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