When Maira Gutiérrez was diagnosed with Chagas disease in 1997, neither she nor her primary care physician had even heard of the malady. She discovered her illness only by chance, after participating in a Red Cross blood drive organized by her employer, Universal Studios.
The Red Cross tests donated blood for a range of diseases, including Chagas, which is caused by a parasite and can develop silently for decades before causing symptoms. The test detected Chagas in her body, and an MRI years later, in 2013, confirmed it had reached her heart.
But it's increasingly present in the United States, where it often goes unrecognized: The Centers for Disease Control and Prevention estimates more than 300,000 people living in the U.S. have Chagas, though lack of awareness and testing means only 1% of cases have been identified. Chagas initially produces flu-like symptoms but can then go unnoticed for decades while it reproduces in the body. Drug treatments can sometimes eradicate the parasite, especially in its first stages, but the window for early detection is short: It does not stay in the bloodstream for long, instead migrating to tissues and organs, where it is harder to detect.
"While a person living in Virginia who is originally from Bolivia [where Chagas is endemic] knows that if diagnosed with Chagas, they should start saving up for a pacemaker," Hernández said in Spanish, "here, the government does nothing and doesn't even know what the disease is." However, building awareness has been an uphill battle. The Center of Excellence for Chagas Disease, the only center in the U.S. dedicated to Chagas diagnosis and treatment, recently suspended operations after its longtime director, Sheba Meymandi, retired.
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