The Power of Second Chances
The Power of Second Chances
Sarcoidosis is a condition that occurs when cells in your immune system form, swollen lumps (“granulomas”) in your body. These growths commonly occur in the lungs, lymph nodes, eyes, and skin, and can sometimes cause permanent scarring (fibrosis) in the lungs, heart, and other organs.
Cardiac sarcoidosis (CS) is a rare and dangerous form of this autoimmune disorder that causes cells to clump together in a way that disrupts heart function. What makes cardiac sarcoidosis particularly deadly is that it can mimic other conditions — and therefore evade proper diagnosis for years.
Over time, these growths can eventually cause the heart to stop working.
Dr. Ronald Schwartz, a nuclear cardiologist and expert in advanced imaging techniques at URMC, confirms the frustratingly diverse range of symptoms sarcoidosis can present:
“It’s a bit of an enigma. It can look like a respiratory issue, a cardiac problem, or even a skin condition. This makes it one of the most challenging diseases to diagnose early.”
For FODASA founder Steve Hilfiker, the disease’s warning signs were varied and misleading: a shortness of breath that made climbing the stairs feel like scaling a mountain, a fatigue that wouldn’t let up, and a persistent cough that refused to be silenced. For years, he went to doctor after doctor, only to be told he that these symptoms were merely the result of allergies or stress.
The fact is that cardiac sarcoidosis often hides in plain sight, disguised by vague symptoms until the damage is severe.
Knowing what you’re dealing with allows patients and doctors to monitor organ function more closely. For example, if sarcoidosis is identified in the lungs early, medications and lifestyle adjustments can help prevent it from spreading to other organs, like the heart or brain. Early diagnosis can mean the difference between living a manageable life and facing life-altering complications—or even organ failure.
Advanced imaging techniques can identify CS sooner and help guide treatment. MRIs and PET scans aren’t just tools for diagnosis—they’re opportunities to stop the progression before it’s too late.
Mary McGowen, CEO of the Foundation for Sarcoidosis Research (FSR) emphasizes the power of awareness: “You may not know how to say the name, you may not know what it means, but everybody needs to care about sarcoidosis and here’s the reason why: because eventually you’ll meet someone that you know intimately who has sarcoidosis.
It’s critically important for you to understand what this disease is and what the signs and symptoms are. If you’re aware of the disease and you know about it, you might be able to save that individual’s life.”
Have you heard of sarcoidosis? Most people haven’t. I had cardiac sarcoidosis. It was misdiagnosed. I was told I had stage D heart failure and needed a transplant right away. My heart failed 5 weeks later. I was on life support through a balloon pump and received seven heart offers in three days at Tampa General Hospital.
After my heart transplant in August 2020 was complicated by sepsis, cardiogenic shock, pneumonia, induced coma, and near-death experiences, I made a full recovery and climbed Sharptop Mountain in Jasper, Georgia 90 days after hospital discharge.
Determined to educate the world on this misunderstood disease, film director Nicholas Markart and I made the ‘Stoneheart’ film which screened at the American Pavilion of Cannes International Film Festival in 2022. We proceeded to interview over 50 sarcoidosis warriors, clinicians, donor families, heart recipients, and caregivers on four continents, including Rhonda McCullough, Bernie Mac’s widow.
Bernie Mac died from pulmonary sarcoidosis and wanted to use his celebrity status to inform people across the globe through the Bernie Mac Foundation about this complicated immune system disorder, which is not as rare as literature suggests.
The symptoms are often misunderstood, and the disease mischaracterized. Self-advocacy and awareness are critical. We are honored to advance awareness for organ donation, sarcoidosis, and methods of early detection of cardiomyopathy through films produced by FODASA.
The FODASA team and I look forward to meeting you! We hope to inspire you to pursue your dreams…
… and never give up, no matter what!