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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.

Courtesy of Sanofi

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

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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.

All photos courtesy of The Coca-Cola Company

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You’re walking down the sidewalk, earbuds in, listening to your favorite hip-hop beats. As your head bobs to the sounds, the sun warms your back. It’s a perfect day.

When the chorus hits, the empty Sprite bottle in your hand becomes a drumstick, passing traffic becomes a sea of concertgoers, and the concrete beneath your feet is suddenly a stage. Spinning on your heels, you close out the song with your face to the sky and hands in the air.

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Photo courtesy of CARE.org
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All images used with UN Foundation's permission

Equality is a birthright that belongs to everyone.

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Equality is a birthright that belongs to everyone. But for girls and women around the world, equality isn’t yet their reality.

Despite the persistence of gender inequality in our societies today, tireless changemakers are fighting to end gender discrimination everywhere so that women’s voices can be heard in all spaces—champions who not only dream of a better tomorrow, but understand the actions needed to make it possible. UN Foundation aims to amplify the stories of those advocates with its fourth annual #EqualEverywhere campaign.

The yearlong campaign, which peaks on International Women’s Day, elevates inspiring stories of gender equality champions from around the world in an online series and on UN Foundation’s digital platforms—from those advocating for more health care access, to transgender rights, to better STEM opportunities, and many, many more. No matter what singular topic these leaders focus on, the message remains the same—girls and women have a right to be equal everywhere.

Here are just a few of those #EqualEverywhere champions working to achieve equality for all girls and all women, wherever they are.

Pelumi Obisesan: supporting women survivors of Boko Haram in Nigeria

While living in northwest Nigeria from 2014-2015, Pelumi Obisesan witnessed firsthand how women in the country are treated as people who wield no political or social power. This lack of agency that women experience was only exacerbated during violent conflicts like the Boko Haram-led insurgency, and their debilitating aftermath. Despite the grave injustices that women suffered as a result—having their sons go missing, being abducted from their own homes and subjected to violence—their experiences, needs, and perspectives were (and are) often relegated to the background in post-conflict efforts. Through personal interviews, Pelumi’s doctoral research has helped their perspectives and experiences play an important role in how policymakers in the Nigerian government move forward in their peace building process, by taking both genders into account. In addition, she is the co-founder of Social Good Lagos, a network dedicated to harnessing the power of new media and technology to make the world a better place.

Saro Imran: fighting for transgender rights in Pakistan

At only 15 years old, Saro Imran was attacked for being transgender in her home country of Pakistan. Since then, she’s been an outspoken defender of transgender rights and justice, speaking with people across the globe about what sexual and reproductive health, rights, and justice means for transgender individuals like herself through the Universal Access Project. Her efforts have helped make huge strides, as with the passing of Pakistan’s landmark Transgender Persons (Protection of Rights) Act, which safeguards the access transgender people have to education, employment, and voting rights, in addition to protecting them from having to undergo nonconsensual clinical assessments of their bodies to determine gender identity. However, Saro notes that “cyber-harassment of transgender people in Pakistan is on the rise.” By organizing local workshops focused on financial education, Saro hopes to give transgender people more independence, and ultimately, the freedom to fully embrace who they are.

Andrea Wollitz: advocating for access to health care for all

As a domestic violence survivor and a mother to a 14-year-old girl, Andrea Wollitz is both motivated by the past and the future in her efforts to advance gender equality and equal access to health care. When volunteering at SafeSpace, a hotline and shelter for survivors of gender-based violence, Andrea helps empower other women who have been through a situation similar to hers, listening to their stories and providing potential resources that might help. And while pursuing a degree in nursing, she became involved with Shot@Life to help more women get access to vaccinations. Mothers typically handle the vast majority of child care without pay, making it especially challenging if they or their children get sick. That’s why having access to vaccinations “gives all of them the ability to reach their full potential,” Andrea says. She’s also involved in other projects related to improving gender equality in health care, including organizing feminine hygiene supply drives to address period poverty and collecting clothing for survivors of sexual assault, whose clothing is often retained as evidence following examination at the hospital.

Whitney Mwangi: helping girls across Africa own their story

Knowing that everyone has a unique story to share, Whitney Mwangi teaches girls and young women across Africa to express themselves through writing. Her platform, The Story Book, is a fun, safe space where young people can find their voice, gain more confidence and learn from others through storytelling. Whitney often saw women (especially young women) sidelined. She even experienced it herself on more than one occasion. Now she takes every chance she can get to offer mentorship and encouragement so that women can live up to their full potential.

Whitney is equally passionate about ending infectious diseases across Africa, especially the three deadliest diseases: AIDS, TB, and malaria. Malaria in particular is a threat to Africa’s younger generations, both for their health and their education, as it prevents them from being able to go to school. By working with global campaigns like United to Beat Malaria, Whitney helps ensure that the voices of young African girls and women are fully accounted for and represented in the global fight to end malaria for good.

Isabel Liu: championing STEM for Girls

17-year-old Taiwanese American Isabel Liu is reimagining what’s possible for the next generation of computer scientists. As a Teen Advisor for Girl Up and a Community Ambassador for the free coding camp Kode with Klossy, Isabel became moved by the glaring gender disparity in STEM (science, technology, engineering, and mathematics). The underrepresentation, she notes, is “consequence and a curse” that leaves women “more likely to be excluded, manipulated, and powerless.” So now she graces stages to share her own stories, and those she’s gathered from others, whether that’s in the form of spoken-word poetry, emceeing, or interviews. Often surrounded by men, Isabel introduces ideas that put female and genderqueer youth at the forefront of social change.

Lady Tee Thompson: creating opportunities for women to grow

Lady Tee Thompson's experiences as a disabled, marginalized, and minority female entrepreneur have shaped and inspired her lifelong efforts to ensure women of all backgrounds have access to education and opportunity. Back in 1989, Lady Tee spoke to the Board of Education as a young student to keep open Highland Park Community College, Michigan’s only Historical Black College at the time, where women made up a majority of the student body. Her efforts kept the school open for several more years, helping more women and marginalized students change their lives. Lady Tee has since shifted from local to global advocacy with a focus on supporting women entrepreneurs around the world. In 2015, after speaking at a women’s empowerment conference in West Africa, where she learned that female farmers were denied training and land rights to scale up their business, she launched a training firm called AgroBiz.org. Their U.S. Study Tours offer a variety of learning opportunities, everything from special farming practices to entrepreneurship. To date, AgroBiz has mentored over 50,000 girls and women across the U.S. and 14 other countries.

In addition, Lady Tee acts as co-Chair of the Women’s Affinity Group for The United Nations Association of the USA (UNA-USA).

UN Foundation’s #EqualEverywhere campaign makes it easy to support these champions and spread their message. Take a stand for women and girls everywhere by posting their stories to social media using #EqualEverywhere and take the pledge at equaleverywhere.org.