Elevating the Need for Sickle Cell Trait Resources Across the State of CA

“Jhaqueline Valle’s job is to track the movements of an enemy you can’t see with the naked eye. It’s a crescent shaped killer the world knows as Sickle Cell Disease. But Valle has a new weapon she now uses by typing nine letters and a dot into the search bar of her computer – CASCDC.ORG.

“This is the first time California has a dedicated site for sickle cell data through the SCDC (Sickle Cell Data Collection) program. It puts information that was once scattered or hard to access in one place, making it visible and usable for the whole community,” says Valle, who is the program director of the Centers for Disease Control and Prevention’s Sickle Cell Data Collection Program.

The new website is a one-stop source for critical information in the life and death struggle against the genetic disease. Sickle cell – a hereditary blood disorder – hopscotches through family trees causing oxygen rich blood cells to warp into sticky, boomerang shaped blobs as they course through veins and blood vessels.

Those mutated cells get clogged up, blocking normal blood flow, which starves organs and other body parts of oxygen and often leads to a life of pain, hospitalizations, and in many cases, early death. Babies are born with the disease when both parents have the sickle cell trait.

In the United States, up to 90% of sickle cell patients are African American with an estimated 100,000 people living with the disease, according to the CDC. But a growing number are LatinX, based on data gleaned from the site, among other sources, such as birth records, Medi-Cal, hospital data, and from sickle cell disease clinics. Valle says just knowing what’s going on with the disease can lead to more funding to fight it and, perhaps, one day a cure.

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Originally published by LA Sentinel