From Darkness to Light - My 21-year journey with a Genetic Heart Disease

I was 19 and on top of the world, a competitive dancer with a passion that fueled my every move. Jazz, tap, ballet, pointe, hip hop – you name it, I danced it. But in an instant, my world came crashing down. A diagnosis of Hypertrophic Cardiomyopathy (HCM) changed everything. I stopped dancing, got a job, and tried to live a "normal" life, but inside, I was crumbling. My heart was getting worse, and I felt helpless. At 23, I underwent a septal myectomy, a surgery that was supposed to give me a new lease on life. Instead, it plunged me into a deep depression.

The pain was unbearable, and the weight gain, later attributed to fluid retention, made me feel miserable. The severe back and shoulder pain from open-heart surgery became my new normal. I felt lost and alone, self-medicating to cope with the emotional and physical agony. For years, I made poor choices, struggling to find purpose in a body that seemed to be failing me. Doctors gaslit me, telling me I was too sensitive and needed anxiety meds, that my heart was fine. But I knew better. I was dying inside.

Then, something shifted. I decided to take control and live, despite the pain. I booked a trip to the EU and spent weeks exploring, pretending I wasn't dying inside. It was a turning point.

Fate intervened, and I connected with a biopharmaceutical group seeking advocacy members. That's when I met my lifesaving doctor, who listened and believed me. With a mechanical mitral valve replacement and my trusty pacemaker, Poppy, I began thriving, not just surviving. The past five years have been transformative. I've discovered purpose in my pain, fueling my passion to help others avoid the desperation and loneliness I endured. I've dedicated myself to advocating for HCM and heart patients, spreading a message of hope and resilience.

Healing my mind was vital to healing my heart. Through my foundation, I aim to provide tools and support to ease the pain and isolation that often accompany heart disease. My journey has taught me that acceptance and moving forward can lead to a life of service and purpose.

If you're struggling with heart disease or feeling lost and alone, know that you're not alone. There is light and love available to you. Don't give up. Keep fighting, and know that there's a better way to approach your disease.

Love & Light - Jillian ✨