World Sickle Cell Day – Tell it Loud

Every 19th of June, the world observes World Sickle Cell Day, a global effort aimed at raising awareness about Sickle Cell Disease (SCD) and advocating for improved care, early diagnosis, and sustained research.

This year’s theme “Tell it Loud” is shining a spotlight on the voices of individuals and families affected by SCD, celebrating their strength and resilience, while calling for better access to healthcare and support services.

What Is Sickle Cell Disease?

Sickle Cell Disease (SCD) is a group of inherited blood disorders that affect the red blood cells. Normally, red blood cells are round and flexible, allowing them to move easily through blood vessels. In people with SCD, the red blood cells become stiff and shaped like a sickle or crescent moon.

These sickle-shaped cells can:

• Block blood flow, causing severe pain (called pain crises)
• Break apart easily, leading to anemia (low red blood cell count)
• Damage organs over time, including the brain, heart, lungs, and kidneys

Basic Facts About SCD

• It’s genetic, not contagious
• It changes the shape of Red Blood Cells
• It causes pain and other health problems
• It affects millions worldwide: most common in people of African, Indian, Middle Eastern, Mediterranean, and Caribbean ancestry.
• Early Diagnosis Saves Lives
• Genotype Testing Is Important

Causes of Sickle Cell Disease

Sickle Cell Disease (SCD) is caused by a genetic mutation in the gene that tells the body how to make hemoglobin—the protein in red blood cells that carries oxygen.

Symptoms of SCD

• Fatigue and weakness
• Pale skin or lips
• Pain in the chest, back, arms, legs, or joints
• Bone pain
• Swollen hands and feet (dactylitis)
• Delayed growth in children
• Blurred or impaired vision

Prevention (Before Birth)

1. Genotype Testing Before Marriage
   • Knowing your genotype (AA, AS, SS, etc.) helps prevent passing on the disease.
   • Couples with “AS + AS”, “AS + SS”, or “SS + SS” have a high chance of having a child with SCD.
2. Genetic Counseling
   • Helps individuals and couples understand their risks and make informed decisions

Treatment and Management (After Birth)

1. Healthy Lifestyle
   • Plenty of fluids
   • Nutritious diet
   • Avoiding extreme temperatures
   • Managing stress and infections quickly
2. Medications
   • Hydroxyurea
   • Folic acid
   • Antibiotics (mostly in children)
   • Pain relievers
3. Blood Transfusions
4. Vaccinations and Infection Prevention
5. Regular Checkups

Key Messages

• Speak up: Share your personal lived experience - whether through poetry, painting, social content, film, or conversation.
• Celebrate resilience: Honor the achievements and strength of the sickle cell community.
• Drive change: Engage policymakers, request better support, and call for improved workplace rights and healthcare access.