Understanding Sickle Cell:

Facts for Allies

Turning Pain into Power through Education, Empowerment, and Elevation (E3).

Here are some common misconceptions about sickle cell disease. Hope this resource helps you understand sickle cell disease and provide a little education.

Myth: Only African Americans are affected.

SCD is an African-American disease.

Fact: SCD is a global health issue.

It affects people of all races and ethnicities, including those of Hispanic, South Asian, Mediterranean, and Middle Eastern descent. Sickle cell disease is not a “black” disease it is a “blood” disorder.

Myth: Pain is exaggerated or drug-seeking.

All Sickle Cell patients seeking opioids are 'drug seekers' or the pain is just 'bad headaches.'

Fact: It is a medical emergency. A real chronic condition.

Pain crises are caused by blocked blood flow (vaso-occlusion) leading to severe tissue and also organ damage. This stigma leads to dangerous delays in treatment.

Myth: If you look healthy, you are fine.

If a person with SCD looks fine, they must be fine. They are lazy or cannot hold a job.

Fact: It is an invisible illness.

Warriors endure chronic pain, fatigue, and organ damage sometimes organ failure while appearing healthy. Always listen, believe, and accommodate the patient's needs.

Myth: Sickle Cell Trait is mild SCD.

Sickle Cell Trait (SCT) is just a milder form of the disease.

Fact: SCT is a carrier state.

SCT (HbAS) is generally asymptomatic and is **not** a disease. It means a person can pass the gene to their children, making testing and counseling key.

Myth: There is a universal cure for everyone.

A bone marrow transplant is readily available and cures all patients with SCD.

Fact: Cure options are limited and complex.

While stem cell and bone marrow transplants can be curative, they are only feasible for a small minority due to risks and donor matching challenges. Management often involves medications like **Hydroxyurea** and frequent **blood transfusions**. These transfusions, while life-saving, carry the risk of **iron overload**, requiring additional monitoring and treatment. Gene therapy offers hope but is currently experimental. Advocacy for research and access is vital.

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