Victoria was diagnosed with Danon disease 11 years after her journey began
My journey with Danon disease started long before I had a name for it. When I was young, I experienced muscle pain and weakness, exhaustion, and occasional chest pain. At 18, I finally saw a cardiologist to make sure everything was okay. Instead, I was sent straight to the hospital when my EKG looked like I was having a heart attack. I underwent an emergency cardiac catheterization that night and was misdiagnosed with myocarditis, a diagnosis that I later learned did not explain what was actually happening.
As the years went on, my symptoms continued to get worse. I experienced increasing chest pain, lightheadedness, exhaustion, muscle pain and weakness, and shortness of breath. Doctors eventually suspected hypertrophic cardiomyopathy, so I went to a well-known HCM center. When it became clear that there could be something more going on, my cardiologist decided to screen me for genetic diseases. In 2023, (11 years later from my previous misdiagnosis) I was finally diagnosed with Danon disease. Within months, I received an ICD as an extra layer of protection for my heart.
One of the hardest parts of living with Danon is accepting the things I sometimes have to miss. I have to carefully conserve my energy, cancel plans, and recognize that my body has limits that I wish it didn’t have.
“I am proud of myself for learning to take life one day at a time. I have had to become resilient—not by pretending that everything is easy, but by continuing to move forward instead of letting my disease stop my life. I try to appreciate the moments I have and find happiness in the life I am able to live .”
I also wish people understood that Danon Disease doesn’t only affect the person who has the disease. It affects spouses, friends, parents, siblings, and everyone who loves and supports them. I am incredibly grateful for the people who have continued to stand beside me through all of it.
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