Eke
Foundation

Education & awareness

Understanding
sickle cell disease.

Everything you need to know — causes, symptoms, genotypes, treatment, and how to protect your family.

What is it?

A blood disorder that shapes every moment of life.

Sickle cell disease (SCD) is a group of inherited red blood cell disorders. Healthy red blood cells are round and flexible, moving easily through blood vessels. In SCD, the red blood cells become rigid and crescent (sickle) shaped.

These sickle cells can get stuck in small blood vessels, blocking the flow of blood and oxygen to parts of the body — causing severe pain episodes called crises, as well as serious organ damage over time.

Nigeria has the highest burden of SCD globally. Approximately 150,000 babies are born with the disease every year.

Medical

25%

of global SCD burden
is in Nigeria

Causes & inheritance

It's passed down from parent to child.

SCD is caused by a mutation in the haemoglobin gene. A child must inherit the sickle cell gene from both parents to develop the disease.

Example: Both parents carry the AS trait

AS

Father

×
AS

Mother

AA

Normal

25%

AS

Carrier

25%

AS

Carrier

25%

SS

SCD

25%

Every pregnancy carries the same 25% risk when both parents are AS

Genotype guide

Know your genotype. Know your risk.

AA

Normal

No sickle genes. Not affected, not a carrier. No SCD risk to children unless partner carries a sickle gene.

No risk

AS

Sickle cell trait

Carries one sickle gene. Usually no symptoms but can pass the gene to children. Avoid AS + AS partnerships.

Carrier

SS

Sickle cell disease

Has two sickle genes. Experiences the full disease — painful crises, anaemia, organ complications.

Most severe

SC

Sickle-Haemoglobin C

One sickle (S) and one haemoglobin C gene. A milder form of SCD but still causes complications.

Moderate

Interactive tool

Genotype calculator.

Select both parents' genotypes to see the possible outcomes for your children.

Father's genotype

Mother's genotype

Possible outcomes for children of ×

This tool is for educational purposes only. Please consult a genetic counsellor for professional advice.

Symptoms

What living with SCD looks like.

Painful crises

Sudden, severe pain in bones, chest, joints, or abdomen — lasting hours to days. The most common complication.

Fatigue & anaemia

Sickled cells break down in 10–20 days vs 120 days for normal cells, causing constant low red blood cell counts.

Stroke

Sickled cells can block blood vessels in the brain, causing stroke — even in children as young as 2 years old.

Acute chest syndrome

Life-threatening chest pain, fever, and breathing difficulty — requires urgent hospital care.

Organ damage

Kidneys, liver, spleen, and eyes can suffer long-term damage from repeated blockages in blood supply.

Delayed growth

Children with SCD often grow and develop more slowly, and may reach puberty later than their peers.

Treatment & management

Treatment options have improved significantly.

While there is no universal cure available to most patients in Nigeria, several treatments can significantly reduce complications and improve quality of life.

Most common

Hydroxyurea

The most widely used medication for SCD. Reduces pain crises, acute chest syndrome, and transfusion needs by increasing foetal haemoglobin.

Potentially curative

Bone marrow transplant

The only proven cure for SCD. Requires a matched sibling donor and carries significant risks. Currently limited to well-resourced centres.

Supportive

Blood transfusions

Regular transfusions reduce stroke risk in high-risk children and manage severe anaemia. Exchange transfusions are used in critical episodes.

Prevention

Penicillin & vaccinations

Daily penicillin from birth to age 5 dramatically reduces the risk of life-threatening infections. Certain vaccines are also essential for SCD patients.

FAQ

Common questions answered.

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