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Local group raises awareness of Cooley's anemia

Cape Gazette of Lewes, Delaware

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Blood disorder rare, genetic trait common

Pennsylvania resident Gabriella Turchi looks like an average 6-year-old: innocent and full of energy.

But Turchi was born with Cooley's anemia, a blood disorder that requires regular blood transfusions and a combination of daily medications.

Gabriella and her mother, Teresa Turchi, visited Rehoboth Beach May 14 for an awareness symposium hosted by UNICO, an Italian-American service organization with two local chapters in southern Delaware, to share information about the rare disease.

"At about 4 months old, we noticed Gabriella was really lethargic and pale," Turchi said. "She wasn't doing the normal stuff normal kids would do. At 4.5 months is when she got her first blood transfusion. And she's been fine ever since. We go every two to three weeks depending on her levels. It's just a part of our life."

Cooley's anemia, known medically as beta thalassemia, is a genetic blood disorder caused by the inability to produce enough of the hemoglobin protein found in red blood cells.

That lack of protein weakens the cells, ultimately resulting in fewer healthy red blood cells traveling in the bloodstream. Currently, the only cure is a bone marrow transplant, Turchi said.

The Cooley's Anemia Foundation is one of UNICO's National Charities, and while the full-blown disease is often rare, carrying the trait is common for people who have descended from Africa, the Middle East, India, Southeast Asia, southern China and the Mediterranean region. The group raised $1,600 for the foundation through the May 14 event.

Turchi urged people to get tested for the Cooley's anemia trait, to be prepared for the possibility of children being born with the disease.

While the rare blood disease affects about 1,000 people nationally, the Centers for Disease Control shows about 2 million Americans carry the trait, which can be passed on to future generations.

For more information about Cooley's anemia, go to www.thalassemia.org.

For more information about UNICO, go to www.unico.org.



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Original Publication Date: May 24, 2016



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