Advocate Encourages People To Get Screened For HCM

Maya Warren and Ben Jordan were both diagnosed with Hypertrophic Cardiomyopathy (HCM). Photo provided by the Hypertrophic Cardiomyopathy Association (HCMA).
Maya Warren and Ben Jordan were both diagnosed with Hypertrophic Cardiomyopathy (HCM). Photo provided by the Hypertrophic Cardiomyopathy Association (HCMA).

Advocate Encourages People To Get Screened For HCM

By Tia Carol Jones

February is American Heart Month and February 26th is recognized as National Hypertrophic Cardiomyopathy (HCM) Day.

Hypertrophic Cardiomyopathy (HCM) is a genetic condition that affects the heart muscle. With people who have HCM, the heart walls become thicker and excessive thickening can lead to the heart stiffening, which can leave less room for blood to flow to the heart. People with HCM can experience loss of energy rapid heartbeat and chest pain, as well as other symptoms. 

According to the Hypertrophic Cardiomyopathy Association (HCMA), HMC affects between 1 in 200 people to 1 in 500 people, and affects 1.3 million people in the United States regardless of age, race and ethnicity, 80% of children who die from HCM-related complications are not athletes and often go undiagnosed.

Bill Rossi is a local entrepreneur, an HCM patient advocate and a Hypertrophic Cardiomyopathy Association (HCMA) board member who was diagnosed with the heart condition in his late 20s. Rossi, who was very athletic, noticed he was short of breath and after three weeks, he went to see his general practitioner. He was referred to a cardiologist who diagnosed him with HCM.

Rossi said when he was diagnosed, he was told that he had to stop working out and lifting heavy weights, which changed his life. He also had to go through the mental aspects of being diagnosed. He’s had open heart surgery and has a pacemaker.

“The disease progresses differently for everybody,” he said. He added that it was passed down from his mother, who died of the disease in her 80s.

Rossi said that HCM is the no. 1 cause of sudden cardiac arrest in young adults. He added that oftentimes, people are misdiagnosed and treated for hypertension, when they actually have HCM. He said that early screening and early detection of HCM is important, because people can live a full life, with treatment. He said that parents with children in their early teens can ask for doctors to screen for HCM. He has had his children screened for it. He added that doctors need to ask the right questions in order to diagnose it. 

Rossi wants people to know that heart palpitations, shortness of breath, dizzy and erythema might be HCM and they should see a doctor. He also wants people who get the diagnosis to know they can live their life to the fullest, with modifications, and to turn the negative into a positive. He refers to himself as a HCM thriver.

The HMCA advocated for the passage of the Children’s Cardiac Safety Act, which aims to improve pediatric cardiac screenings during wellness visits and athletic exams. In December 2024, it was signed into law by President Joe Biden. In Illinois, HB5394, which requires schools and athletic centers to have a comprehensive emergency response plan, became a law in July 2024.

For more information about Hypertrophic Cardiomyopathy and the Hypertrophic Cardiomyopathy Association, visit 4hcm.org.


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