Medscape Rare Disease Crusader: Leslie Cooper, MD

From 1905 to 1993 there were only 90 reported cases of giant cell myocarditis, the cardiac condition Cooper specializes in treating. Today, there are 20 known patients in the world.⠀

Cooper, the chair of cardiovascular disease at the Mayo Clinic in Jacksonville, Fl., says he became interested in treating giant cell myocarditis because of a patient he treated early in his career.⠀
“She was admitted to the ICU and died of giant cell myocarditis which at the time was always fatal. She was a young, healthy vibrant 28-year-old and there was nothing I could do to save her. It bothered me a lot,” he says.⠀

Thanks to Cooper’s work and the work of others, an immunotherapy treatment was developed that translates into a 50% one year survival rate. With further advances in the pipeline, he’s confident that survival rate will rise to 90%.⠀

Giant Cell Myocarditis typically strikes people in their forties, though Cooper has treated children and elderly patients with the condition. He suspects myocarditis disorders often go undiagnosed because most physicians don’t think of them.⠀ ⠀
“You first have to think about it as a diagnosis,” he says. “Then when you suspect a patient has giant cell myocarditis, you have to make sure they get to a center where they can do a heart biopsy and where they can do a heart transplant if needed.”

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