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Will Tyson: A Heartfelt Advocate
Will Tyson lives with a rare genetic heart disease called cardiomyopathy, just like his father, Mark. Their shared diagnosis changed everything, but instead of staying silent, Will chose to speak up.
At 19, Will collapsed while playing basketball. That moment led to a life of medical care, emotional challenges, and deep family bonds. Through writing, Will turns pain into purpose—raising awareness, building community, and showing others they’re not alone.
His story is about more than illness. It’s about love and the power of sharing what’s real.
My name is Will
It is also my father’s story. We both live with a rare genetic heart disease that has changed our lives in ways we never expected.
Rare diseases are often invisible to the world. People don’t talk about them much, and many doctors only see them in textbooks.
But for my family, this disease is not just a medical term; it’s part of our daily life. It has tested us, broken us at times, and also taught us what strength really means.
The Day Everything Changed
I was 19 when my life turned upside down. I was in college, full of energy, playing basketball with friends one winter afternoon. Suddenly, I collapsed on the court. At first, everyone thought it was just exhaustion. But it wasn’t.
Doctors told me I had a rare genetic heart disease called Cardiomyopathy. It weakens the heart muscle and can even cause sudden cardiac arrest.
Hearing those words was like being struck by lightning. Overnight, I went from being a student and athlete to being a patient. My life became about medicines, check-ups, and the constant fear of what my heart might do next.
What Is Cardiomyopathy?
Cardiomyopathy is a disease of the heart muscle. In simple terms, it makes the heart weaker and less able to pump blood the way it should. Over time, this can lead to heart failure, irregular heartbeats, or even sudden cardiac arrest.
There are different types of cardiomyopathy, but in rare genetic forms—like the one that runs in the Tyson family—the condition is inherited and can affect multiple generations.
Key Symptoms
People with cardiomyopathy may experience:
- Shortness of breath, especially during activity or even at rest
- Chest pain or pressure
- Fatigue and weakness that don’t go away with rest
- Swelling in the legs, ankles, or feet
- Dizziness or fainting spells
- Irregular or rapid heartbeat (palpitations)
My Father’s Diagnosis
What made this even harder was that my father, Mark, had been diagnosed with the same disease three years earlier. At the time, we thought it was just bad luck.
But when I collapsed, we realized it wasn’t coincidence, it was inheritance.
Genetic testing confirmed it. The disease was in our DNA. My father carried it, and so did I.
For him, the guilt was heavy. He had always been the strong one in our family, the man who built our home with his own hands. Now, he felt like he had passed down something that could take away my future.
Is There a Way Out of Genetic Cardiomyopathy?
Right now, genetic cardiomyopathy cannot be fully cured. There are several ways patients can live longer, healthier lives:
Medications:
Drugs like beta-blockers, ACE inhibitors, and blood thinners help the heart pump more effectively. It reduces risks of dangerous rhythms.
Devices:
Pacemakers and implantable cardioverter-defibrillators (ICDs) can correct abnormal rhythms. It helps prevent sudden cardiac death.
Surgery & Transplants:
In severe cases, surgery to remove thickened heart muscle or a full heart transplant may be needed.
Lifestyle Adjustments:
Careful exercise, diet, and stress management are essential. It helps reduce strain on the heart.
Gene Therapy (Emerging):
Clinical trials are underway to repair or replace faulty genes. For example, the Cleveland Clinic recently performed the world’s first in-human gene therapy for hypertrophic cardiomyopathy. These therapies aim not just to manage symptoms but to address the root genetic cause.
So, while there isn’t a way out yet, there is real hope on the horizon.
What Makes the Our Tyson Family Different
Many families facing rare diseases retreat into silence. The Tysons chose the opposite path. Here’s what sets them apart:
- We turned our pain into storytelling
- Mark became the mentor in resilience
- Community Building
- We reframed our Legacy
- We live with a purpose
The Setback That Broke Us
As I was trying to accept my diagnosis, my father’s health got worse. His heart weakened so much that he was placed on the transplant list.
Our family’s world turned upside down. Medical bills piled up. Our savings disappeared. Our home became a place of constant hospital visits, paramedics, and quiet prayers.
The hardest part for me wasn’t my own illness; it was watching my father struggle. The man I had always seen as unshakable now needed help just to walk across the room. I found myself holding his arm, guiding him to appointments. We were both fighting the same battle, side by side.
What Rare Diseases Really Mean
Living with a rare disease is about more than just the medical side. For us, it has meant:
- Money struggles: endless bills, insurance fights, and the cost of lifelong care.
- Emotional weight: fear, guilt, and the constant question of “what next?”
- Identity changes: my father went from provider to patient; I went from athlete to survivor.
- Community: finding strength in others who share their stories.
Rare diseases don’t just affect the body; they affect the whole family.
Turning Pain into Purpose
Despite everything, we decided not to let this disease define us. Instead, we made it part of our legacy.
For me, that means raising awareness. I want young people with rare diseases to know they are not invisible. My writing has become a lifeline for me and for others.
For my father, it means showing strength through honesty. By sharing his struggles, he gave me permission to share mine. Together, we turned our pain into something bigger: solidarity.
What We’ve Learned
Our journey has taught us lessons that go beyond medicine:
- Resilience is about adapting, not denying. We learned to live within new limits while still finding meaning.
- Stories heal. Writing and sharing has helped us and others feel less alone.
- Legacy is more than DNA. Yes, I inherited my father’s disease. But I also inherited his courage.
- Setbacks can be beginnings. What felt like the end of possibility became the start of advocacy.
Why Stories Like Mine Matter
Rare diseases often go unnoticed. That’s why stories matter. They:
- Raise awareness for conditions that need more research.
- Show the human side behind statistics.
- Inspire resilience, proving that even in the hardest times, life can still hold meaning.
Final Thoughts
Our family’s journey is not just about tragedy; it’s about transformation. My father and I, bound by blood and by illness, turned our greatest setback into a story of endurance.
My heart may be fragile, but my voice is strong. And through that voice, I hope to remind others that even in suffering, there is survival, solidarity, and love.
DISCLAIMER
The views expressed in this article are the author’s own and do not represent any medical advice.