When Mark was thirteen, he had what he calls “attacks”, which were put down in his medical records as “blackouts”. In his late 30s, he started having these “blackouts” again, but still, the doctors didn’t check his heart.
“The doctors thought it was epilepsy,” says Mark. “I even had one of these events on a plane. Finally, they realized that it was heart-related.” Even though Mark’s subsequent “blackouts” happened in front of doctors, they still couldn’t figure out what was causing Mark to have his heart events.
Mark met a woman named Maria in the ICU. Although Maria didn’t have a medical degree, she was very interested in rare diseases. She was the first one who ever suggested to Mark that he look into a condition known as Brugada Syndrome.
“Within two days, I finally had a formal diagnosis,” he says. “I immediately needed to have an ICD implanted. All my children and I went through genetic testing; my oldest daughter was also diagnosed with Brugada Syndrome.” Brugada Syndrome is a rare cardiac condition that affects less than 0.02% of the population in the West, and results in a disturbance of the heart’s electrical system.
Mark has been living his life to the fullest, despite his diagnosis – and that includes the incredible feat of completing an Ironman (a triathlon consisting of a 2.4-mile swim, a 112-mile bicycle ride and a 26.22-mile run – a total of 140.6 miles).
“It’s so important to always try and find a way to do what you love,” he says. “It was a huge undertaking. My doctor wanted me to get a professional coach involved before he felt that he could support this effort.”
Mark made a list of almost a hundred potential coaches, and began to interview them. “Not one of them was interested in learning more about Brugada Syndrome, or how they could help me train
A mutual friend introduced him to personal training studio called PassionFit in the UK. “They have been an incredible support,” says Mark. “They wanted a letter from my cardiologist with his approval, and so I did further testing with my doctor to provide me with the relevant paperwork and authorization to be able to continue and train.”
The cardiologist was still not satisfied – which is when Mark got in contact with Dr. Pedro Brugada, one of the researchers and clinicians who first discovered the syndrome, as well as Dr. Ben Glover, an expert cardiologist who now back practices in Ireland.
“They confirmed that I had Brugada Syndrome, and told me, after testing, that I had their support to complete an Ironman,” says Mark. “Together, my doctors, my coaches and I made a plan. I was monitored every day throughout my training – and I still am. I created a detailed diary of my training, and very slowly progressed my training to see how I would cope.”
Two years ago, Mark completed his first triathlon. “It was very emotional,” he says. “If I hadn’t planned it right, I knew that I risked the triathlon being my last. I knew that if something happened to me, it might also hurt others who wanted to continue on that same path. But with the support of other triathletes, my coaches, medical professionals & my family I completed it. It was such a wonderful feeling.”
Mark is grateful to his coaches, medical professionals, and his family – and also to Maria, the woman who helped him find a diagnosis & saved my life. “My youngest daughter was born three months after my diagnosis,” says Mark, “and we named her after Maria, with whom we’re still in great contact.”