“We're trying to raise awareness about the disease so that it can be diagnosed early because if it gets diagnosed early, the likelihood of surviving it is much higher,” Rumore said.
Myocarditis is inflammation of the heart’s muscular wall, and while considered rare, it can be deadly if left untreated, according to the American Heart Association. The disease is more likely to impact males and young people from puberty into their early 30s, Rumore said. Causes of myocarditis include viral or bacterial infections and some medications.
Symptoms of myocarditis—such as chest pain, dizziness and shortness of breath—often go undetected, Rumore said. Effective myocarditis treatments include three to six months of heart rest—meaning no exercise, smoking, caffeine or anything that overworks the heart—and medications to reduce symptoms.
Young athletes are especially inclined not to take the full time to rest and recover, Rumore said, making them especially vulnerable, even in otherwise good health.
“A lot of them are working towards scholarships, and they're like, ... ‘I'm pushing myself; I can do this,’ and unfortunately, a lot of the people that are out on the ball fields when they collapse, ... they wound up with a lethal cardiac arrhythmia,” Rumore said.
Rumore said her husband, whom she met in high school, developed myocarditis at a young age. Rumore’s husband has been able to get treated for his myocarditis, but not all doctors are familiar with the disease, she said, or don’t expect to see it in their young patients.
“I'm trying to educate everybody because you never know ... when it could affect you, and ... if the doctors aren't going to think about, ‘Could this be myocarditis?’ Then you need to put it in their lap,” Rumore said.
The Myocarditis Foundation was formed in New York in 2001 by Candace Moose—a survivor of giant cell myocarditis, an extreme form of the disease—and Dr. Leslie Cooper—the doctor who helped save Moose’s life, Rumore said. Cooper and Moose remain on the foundation’s board of directors, but in 2015, Rumore took over as executive director, eventually moving the foundation’s headquarters to Kingwood.
The foundation has a three-pronged approach to tackling myocarditis, Rumore said: education, research and family support. Members of the foundation present information at schools and community events to spread awareness about the disease, Rumore said.
It also offers funding for myocarditis research and organizes events for survivors and families who have lost loved ones to the disease. Donations are always needed to help these efforts, Rumore said.
To detect myocarditis, doctors run tests such as blood tests, X-rays and electrocardiograms, according to the Mayo Clinic. There is not one set test used to diagnose myocarditis, but Rumore said the foundation hopes researchers will eventually discover one.
Growing awareness of myocarditis is extremely important, Rumore said, especially because she fears numerous people who were infected by coronavirus might unknowingly have contracted myocarditis.
“[Myocarditis] is considered rare,” Rumore said. “It's not as rare as everybody thinks. We really don't think so. We think it's just misdiagnosed or underdiagnosed.”
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