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You'd probably never know this woman's had a debilitating disease since birth.

Cassandra Trimnell was diagnosed with sickle cell anemia in 1987 when she was just a baby.

She inherited the gene that causes this disease from both of her parents, meaning she has sickle cell type SS.This means she can experience the worst symptoms — including fatigue, extreme joint pain, anemia, and infections — at a higher rate.  

She's not the only one with sickle cell in her family either. Her younger sister Joanne was also born with it, and two of her other siblings have the trait, which means they don't have the disease but can pass it along to their children.


While she never had that shocking moment of hearing her diagnosis for the first time, she always knew she was different.

Cassandra as a child. Photo via Cassandra Trimnell.

When she started school, she had to constantly drink water and stay inside during recess when it was too hot or too cold to avoid pain episodes. Kids would occasionally ask her if she was contagious. It all made her feel incredibly isolated.

She was always a lot smaller and skinnier than the other kids at school, which meant that others often treated her like she was more fragile.

As a kid she also regularly felt sick and was in the hospital on a monthly basis. This often affected what she desperately wanted to do. For example, she was in a choir that was going on tour for which she had been planning and practicing for months. However, on the day they were supposed to leave, Trimnell was in the hospital.

Cassandra (left) with her sister Joanna. Photo via Cassandra Trimnell.

However, her mom was wonderful about helping her cope with the disease, and most importantly, she didn't treat her like she was going to break.

"You’re not like everybody else," Trimnell recalls her mom saying. "You need to look out for yourself. Look out for your health."

One aspect of sickle cell anemia that makes it such a difficult disease is that its symptoms aren't always visible to others.

"It’s like you’re fighting these invisible demons that nobody sees," Trimnell says. "Some of my earliest childhood memories are being hunched over in excruciating pain thinking I was going to die," she says.

This lack of visible "proof" that sickle cell disease is debilitating is one of the more frustrating aspects of living with it. You might see someone with sickle cell going through a pain crisis, but from the outside it just looks like they're playing a game on their phone. That's actually a coping method.

"We’re on our phones playing games because we’re distracting ourselves from the pain," Trimnell says.

Cassandra in the hospital with her husband. Photo via Cassandra Trimnell.

While it is the most common genetic condition around the world, it's rarer in the United States, which makes it even less visible.

And the current lack of understanding about symptoms and treatment among the general publiccan go from irritating to downright scary when someone with the disease goes to the hospital. Sometimes emergency room doctors don't believe sickle cell patients are in as much pain as they are because they seem to be handling it OK, which in turn affects their care.

"If doctors don’t think your pain is serious, then you won’t get treated seriously," Trimnell explains.

This is why Trimnell is now committed to raising sickle cell awareness.

Trimnell and members of Sickle Cell 101 at the 2017 Health and Resource Expo at Lincoln Elementary. Photo via Cassandra Trimnell.

She launched her nonprofit, Sickle Cell 101, in 2013. The idea came from a college biology course and an Instagram account.

When her biology class got around to talking about blood disorders like sickle cell, she was shocked by how unfamiliar her classmates were with it.

So shedecided to get creativeto give people a better understanding of the disease.

She began posting a number of facts on Instagram and received an overwhelming positive response.

#SickleCell red blood cells can squeeze through most blood vessels! #SickleCellEducation

A post shared by Sickle Cell 101 (@sicklecell101) on

Just like that, she was on the path to raising awareness full time. And today, her nonprofit specializes in educating the sickle cell community as well as the general public on various aspects of the disease.

The goal is to help people with the disease be treated with more mindfulness, especially if they're children, which is how Trimnell should've been treated when she was younger.

Trimnell knows she's not like everyone else, but now she realizes it's better to talk openly about her disease rather than hide it.

Cassandra (left) with her sister Joanne. Photo via Cassandra Trimnell.

When she was little, she didn't mention it to friends because she didn't want to be pitied or treated like a patient. Today, she's constantly sharing the challenges sickle cell patients face so that kids growing up with the disease remember they're not alone.

She sends the same message to parents who've recently found out their child has sickle cell anemia.

"People have sickle cell all over the world. You won’t lead a normal life, but it’s not a death sentence."

The best way to live with sickle cell disease is to stay healthy, positive, and turn to the support of groups like Sickle Cell 101 and Sickle Cell Warriors.

For those who don't have the disease, the best way to support those who do is to read up on it.  The more people who understand it, the less isolated those living with it will feel.

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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.

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.

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