WHAT IS SICKLE CELL DISEASE (OR SICKLE CELL ANEMIA?)
 

Sickle Cell Anemia is a genetic disease in which your body produces abnormally shaped red blood cells. They are shaped like a crescent – or sickle. These cells don't last as long as normal, round red blood cells. This leads to anemia. Sickle cells also get stuck in blood vessels, blocking blood flow and causing pain and organ damage. Sickle Cell Disease causes periods of crippling pain – known as pain crises – that can last for days or even weeks.

Estimates indicate about 100,000 Americans are living with SCD. People are diagnosed through testing. Virginia’s newborn testing requires hemoglobinopathy screening, which identifies about 75 infants with SCD each year.

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PROMOTING THE TRUTHS OF SICKLE CELL DISEASE

 

Sickle Cell Disease is a largely misunderstood disease, which is why we’re committed to educating people, raising awareness and dispelling myths.

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The truths are:

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• ​It is estimated that:

  • SCD affects approximately 100,000 Americans.

  • SCD occurs among about 1 out of every 365 Black or African-American births.

  • SCD occurs among about 1 out of every 16,300 Hispanic-American births.

  • About 1 in 13 Black or African-American babies is born with sickle cell trait (SCT).

  • Since Virginia added hemoglobinopathy screening to its newborn testing in July 1989, an average of 75 newborns each year have been identified with sickle cell disease.
     

• Sickle Cell Disease is a genetic blood disease. It is not contagious.  Sickle Cell Disease is more than a single disease. Currently, four known gene patterns result in different clinical outcomes and levels of severity. We treat patients with every type.

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• This is a worldwide disease. Based on current estimates, there are more individuals in India with sickle cell than in the U.S. This disease does not single out one race or culture.

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• A small number of Sickle Cell cases can be cured. However, the rigorous one-year treatment plan includes a bone marrow transplant and chemotherapy. One of the earliest medications for sickle cell remains one of the best options for managing the disease.
   

• Hydroxyurea, Oxbryta,  Adakveo, and Endari are the only FDA medications approved to improve quality of life for patients that meet guidelines for treatment.

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• Patients take high doses of pain medication to manage their day to day pain.

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• Some patients need to have chronic transfusions every 4-6 weeks.

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• Bone Marrow Transplant is an option for a selective patient pool.

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