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Here's what life is like with an 'invisible disease.' It's kind of intense.

We don't always think of it as life-threatening, but it is.

That's me with my little brother in 1990. I was 10 years old.

I know what you're thinking. I had style written all over me!


If you can tear your eyes away from the photo for a few minutes — which I understand is difficult because my bad perm and glasses that are half the size of my face are extremely engaging — I'll tell you why this picture is significant.

This was taken one year after I was diagnosed with type 1 diabetes.

We were on a camping trip in the middle of nowhere, a three-hour drive from the nearest town and emergency services, reachable only via a narrow dirt mountain road.

My parents debated whether it was safe for us to take such a trip so soon after learning that my life wouldn't be "normal" again. Because for type 1 diabetics, particularly children, not being able to call 911 can be deadly.

Type 1 diabetes is a disease in which the pancreas, which produces the hormone insulin that is necessary for converting the glucose in food into energy, quits working. It's an autoimmune disease, which means that a type 1 diabetic's body pretty much kills its own pancreas. The cause is unknown, and there's no cure.

The way a type 1 diabetic stays alive is through multiple daily insulin injections (or an insulin pump), blood glucose monitoring, and a lot of hoping for the best because often, no matter how "right" we do things, stuff still goes wrong.

I'd spent 10 days in the hospital after I was first diagnosed, learning how to stay alive. And then my family and I spent the next year learning how to live while I stayed alive.

Living and staying alive are two different things.

One year later, with the encouragement of my doctors, my parents planned carefully and we went on our trip. Very. Big. Deal.

So why am I sharing this embarrassing photo with you? Because there are a few things I'd like you to know.

Type 1 diabetes isn't all that common.

Because it has a nearly identical name to type 2 diabetes, it's easy to confuse the two and conclude that a lot of people have it. But in reality, about 1.25 million Americans live with type 1 diabetes (versus 29 million with type 2).

Type 1 diabetes never gets better, never goes away, and, so far, cannot be "cured."

It's a disease that requires managing 24 hours a day. While I know that I speak for every single type 1 diabetic when I say we're incredibly grateful for insulin — because we'd literally drop dead without it — it's not a cure.

It doesn't prevent the daily dangers of high and low blood sugars, and it doesn't prevent the long-term complications that so many type 1s face.

Being alive is awesome, though! Seriously. But it's not always easy.

I have always had access to the medications, supplies, and good doctors that are necessary to help keep me alive. That's what made my childhood trip possible, and it's a benefit I don't take for granted.

With new developments in technology like continuous glucose monitoring, children growing up today have even more options and medical support than I did. That's the good news. But it's still pretty hard. Don't just take my word for it.

This is the New York Times' day-in-the-life look at a type 1 diabetic teenager named Grace and her mom.

Grace's mom sums up the struggle, effort and energy of her daughter's daily life pretty simply:

"It's kind of overwhelming to say it, but that's the way she lives."

While some of the medical technology has gotten a little better since I was diagnosed 25 years ago, the truth is that not much has changed. Grace's life is almost exactly what my childhood and my parents' lives were like — minus the dog. (If you do nothing else, watch the video for her superhero dog. He's pretty amazing.)


Intense, right? People like Grace and I look pretty "regular" on the outside. But managing type 1 diabetes is a lot of work.

Know anyone who lives with an "invisible disease"? It's possible that you do and don't even know it! Share this video to let them and the world know that you realize how hard they are working — just to stay alive.

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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.

@geaux75/TikTok

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