Sandy Cowin is on a mission to raise awareness about Brugada Syndrome – a rare genetic cardiac condition that affects the heart’s electrical system.

She’s raised awareness through sharing her story with Spectrum News Albany, writing about cardiac conditions for her Employee Assistance Program newsletter at SUNY, and, most recently, placing a billboard in Binghamton, NY about the warning signs of these conditions.

“I want to spread as much awareness as I possibly can,” she says. “There are too many stories of someone suddenly dying, and if even one person can be helped by this, it’s worth it.”

Sandy’s journey with Brugada Syndrome began with a devastating loss. Her father passed away suddenly from cardiac arrest in 2009 as a result of Brugada Syndrome at the age of 65.

“As anyone who loses someone suddenly knows, it’s really shocking,” she says. “He led a very healthy and active life until he died suddenly and unexpectedly, although there were warning signs for many years, including fainting during a fever.”

Finding Answers at NYU Langone Health

Sandy and her three siblings reached out to NYU Langone Health’s Inherited Arrhythmia Program, part of its world-renowned Heart Rhythm Center soon after her dad passed away, where she began seeing Dr. Marina Cerrone, an experienced researcher in the field, and later, Dr. Lior Jankelson, who is director of the program.

“Dr. Cerrone was the first person I was in touch with about Brugada Syndrome,” says Sandy. “She’s been phenomenal for the past thirteen years. She’s helped me understand Brugada Syndrome, helped calm me down in times of anxiety and uncertainty, and been wonderful with both me and with my son.”

Sandy and her siblings were tested for Brugada Syndrome in 2009, but the genetic testing came back negative for Sandy. “Dr. Cerrone was wonderful in guiding my next steps,” she says. “She didn’t say, OK, it’s negative, so you’re done. When a clinical trial came up, she reached out to me.”

Sandy’s positive diagnosis came from clinical trial through a flecainide infusion. 

She wants families who’ve just received a diagnosis of Brugada Syndrome to know that knowledge is power. “As soon as you have a diagnosis, you’re in control,” she says. “I know which medications I can take, how to control a fever, and what I can and can’t do. This diagnosis doesn’t control me – I have the knowledge now to control the situation.”

She also recommends finding a knowledgeable doctor and reaching out to the SADS Foundation, as well as connecting with other families who have a similar diagnosis.

If you’ve just received a diagnosis of Brugada Syndrome, or believe that you may have a SADS condition, reach out to the SADS Foundation for help here.