A Long Search for Answers

For most of her adult life, Lisa sensed something was not quite right. She developed cataracts unusually early, losing vision in her twenties and requiring multiple corrective surgeries before age thirty. Over the years, weakness, fatigue, and gait changes slowly became part of her daily life. Yet even while living in proximity to leading medical centers, the explanations she received never fully lined up.
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Some clinicians suspected MS. Others raised the possibility of ALS. A muscle biopsy returned inconclusive results. For years, Lisa lived with uncertainty and a growing list of unanswered questions.
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As these symptoms progressed, Lisa was ultimately forced to step away from her teaching career, as the physical demands of the classroom became increasingly difficult to manage.
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Everything changed in 2019 at age fifty-six, when a neurologist recognized the pattern of her symptoms and diagnosed her with DM2. In a way, the diagnosis finally brought clarity.

“I’m thrilled companies are trying to find something for us. It uplifts me to know this work is happening.”

Facing DM2 Together

Lisa’s greatest source of strength is her husband of more than twenty years, Angelo. As her support partner, he approaches every challenge with calm, optimism, and practical problem-solving. He observes the details of daily life that doctors often never see, things like transfers, stability during simple tasks, lifting legs into bed, or managing cookware.

“Care partners see what actually happens at home. It’s not just numbers. It’s how life really works.”

His perspective helps Lisa’s care team understand the full picture of her needs, and it helps Lisa feel safe, supported, and less alone.

Adapting Home and Life with Purpose

Fatigue, balance instability, and proximal weakness shape much of Lisa’s day. Rather than letting these limitations control their lives, Lisa and Angelo made thoughtful adaptations that protect Lisa’s independence and dignity.

Their home now includes a four-stop elevator, widened circulation space that accommodates mobility changes, a roll-in shower, higher toilets with rails, an adjustable bed, and smoother pathways throughout the property. Angelo’s architectural background allowed him to design these changes with both safety and beauty in mind.

“Design gives you independence. It lets you keep your dignity.”

These modifications are not simply functional. They represent their shared commitment to ensuring that Lisa is supported at every stage of the disease.
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Breaking Through Stigma and Misdiagnosis

Lisa and Angelo want people to understand how often DM2 is overlooked. Even with clear warning signs like early cataracts and characteristic gait changes, many patients spend years searching for answers.

“DM2 is missed far too often. People deserve earlier recognition and better understanding.”

Greater clinician education, they believe, would help families avoid years of unnecessary uncertainty.

Finding Support in Community

For Lisa and Angelo, the Myotonic Dystrophy Foundation has been a lifeline. Monthly DM2 groups, practical advice, new friendships, and a sense of belonging have eased the isolation that so often accompanies this rare disease.

“The Foundation’s community has been incredible for us."

Through connection, they found both emotional support and a renewed sense of purpose.
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Hope in Research and the Future Ahead

Today, Lisa feels hopeful as she follows progress in DM research. She believes breakthroughs in DM1 can eventually inform treatments for DM2, and she is inspired by advances in gene and biologic science.

Her dreams are simple and profound. She hopes for renewed strength, better balance, and the ability to reclaim pieces of independence the disease has taken from her. She also hopes future generations will have a clearer path.

“It gives you hope for our children, our friends, and the next generation."

Appreciation for ARTHEx and Patient-Centered Science

Lisa is deeply grateful for companies that are taking time to learn from the lived experiences of people with DM2. She believes this makes science stronger and more compassionate.

“Biotechs need to listen to the lived experience. It keeps programs patient-centered."

She feels uplifted knowing that ARTHEx is committed to the community, engaged with patient organizations, and focused on helping families feel seen.

A Partnership Built on Love and Resilience

Lisa and Angelo face DM2 together with honesty, grace, and unwavering devotion. Their story is one of adaptation, emotional endurance, and hope grounded in science and community.

They remind us that behind every research milestone is a real couple navigating life with courage and optimism, determined to make each day meaningful.

Patient's Stories

Lisa & Angelo’s Story: Navigating Life with DM2 Together