Facts vs Myths
Knowledge Series

Demystifying Sickle Cell Disease.

Learn the facts about Sickle Cell Disease (SCD), its diagnosis, and how to manage it. Then, test your knowledge to become a better ally for the SCD community and help break the cycle of misinformation.

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The Truth
Knowledge is Power

"Understanding Sickle Cell Disease is the first step towards better care and support."

What is Sickle Cell Disease?

Sickle cell disease (SCD) is a common genetic blood disorder typically inherited from ones parents. It results in an abnormality in the oxygen-carrying protein called haemoglobin found in red blood cells.

In sickle cell disease, normal hemoglobin which is round and shaped like a doughnut is replaced with sickle hemoglobin that is shaped like a sickle.

Watch Explainer Video

How is it Inherited?

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Normal
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Trait
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SS
Disease
usual
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AS
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Diagnosis

Diagnosed through newborn screening for genotype using dried blood spot specimen. Done for babies from birth to 6 weeks of age.

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Blood sample taken from baby's heel (lancet ≤ 2mm).
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Result available within 2 weeks of sample collection.

What next after getting diagnosed

If positive, parents are contacted and the baby is brought to the University of Abuja Teaching Hospital for a confirmatory test.

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Start Prophylaxis Immediately Free penicillin V and folic acid are provided for 5 years to prevent infections. Do not miss doses.
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Enrol in the Paediatric Clinic Regular clinic visits allow healthcare providers to monitor your child's growth, development, and prevent complications.
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Keep Immunisations Up to Date Children with SCD are at higher risk of infections. All vaccines — including malaria prevention — are critical.
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Test Your Other Children It is important to know the sickle cell status of all your children so they can receive appropriate care and counselling.

How It Affects the Body

The "sickle" shape isn't just a cosmetic change; it creates two major problems in the bloodstream:

Vaso-occlusive Crisis (Pain Crisis)
The rigid, sticky cells get stuck in small vessels, blocking blood flow. This deprives tissues of oxygen and causes sudden, intense pain.
Anemia
Normal red blood cells live about 120 days. Sickled cells are fragile and break down after only 10 to 20 days, leaving the body chronically short of red blood cells.
Common Symptoms
  • Extreme Fatigue: Due to the lack of oxygen-carrying cells.
  • Swelling: Often seen in the hands and feet (dactylitis), especially in infants.
  • Frequent Infections: The disease can damage the spleen, which is vital for fighting germs.
  • Vision Problems: Tiny vessels in the eyes can become blocked.

The Genetics of SCD

SCD is a genetic condition, not something you can "catch." It is passed down via an autosomal recessive pattern.

Sickle Cell Trait vs Disease
  • Sickle Cell Trait: If a person inherits one mutated gene from one parent, they have the "trait." They usually don't have symptoms but can pass the gene to their children.
  • Sickle Cell Disease: If a person inherits the mutated gene from both parents, they will have the disease.
The HBB Gene Mutation
The specific mutation occurs in the HBB gene, which provides instructions for making a subunit of hemoglobin. In the most common form (HbSS), a single nucleotide substitution causes the amino acid glutamic acid to be replaced by valine.

Treatment and Management

While SCD is a lifelong condition, medical advancements have significantly improved quality of life and life expectancy.

Hydroxyurea
A daily medication that helps the body produce "fetal hemoglobin," which prevents cells from sickling.
Pain Management
Includes hydration, over-the-counter NSAIDs, or stronger prescriptions during a crisis.
Blood Transfusions
Used to increase the count of normal red blood cells and reduce stroke risk.
Gene Therapy
Newer, cutting-edge treatments (like CRISPR-based therapies) that aim to "fix" the genetic instruction.
Bone Marrow Transplant
Currently the only known cure, though it requires a closely matched donor and carries significant risks.

Know What to Watch For

Monitor your child's temperature, temperament, skin, and eye colour. If you are concerned, always speak with a healthcare provider immediately.

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Fever
If your child's temperature is above 38°C, this is a medical emergency. Go to urgent care immediately — do not wait.
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Yellow Eyes
Yellowing of the whites of the eyes (jaundice) is a common sign of SCD. Darkening or increased yellowing needs prompt attention.
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Pale Skin or Hands
Pallor of the skin, mouth, or hands can signal anaemia from reduced healthy red blood cells circulating in the body.
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Swelling
Swelling of the hands, feet, or other body parts (dactylitis) can be painful and is an early sign in infants with SCD.
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Poor Feeding
If your baby is not breastfeeding or eating well, or shows changes in appetite, this warrants a conversation with your provider.
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Unusual Mood
Excessive crying or unusual quietness can indicate your baby is in pain or discomfort. Trust your instinct as a parent.

Caring for Your Child at Home

As a parent, you are your child's first line of defence. These daily practices make a real difference in long-term outcomes.

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Nutrition & Fluids
Ensure your child drinks plenty of fluids and eats nutritious meals. Monitor feeding patterns — poor intake can trigger crises.
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Monitor Growth
Work with your healthcare team at regular clinic visits to track your child's weight, height, and developmental milestones.
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Malaria Prevention
Children with SCD are at significantly increased risk from malaria. Use nets, repellents, and complete prophylaxis courses.
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Know Emergency Care
Always know the location of your nearest emergency facility. Do not wait — go immediately if you see warning signs.
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Fever Above 38°C = Emergency
Have a thermometer at home. If your baby feels warm, check immediately. A temperature over 38 Celsius requires emergency care — do not wait to see if it improves.

Everyone Has a Role

Children enrolled in proper care have significantly better outcomes. Denial and delay cost lives.

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Parents
Enrol your child immediately after diagnosis. The father, as head of the family, plays a critical role in ensuring the child receives consistent care. Denial puts lives at risk.
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Community
Combat stigma. Share accurate information. A supportive community reduces the psychological burden on families and encourages early care-seeking behaviour.

Myths & Misconceptions

❌ Myth: It's a death sentence.
While clinical follow up is needed, people living with Sickle Cell Disease can live full, satisfying lives.
❌ Myth: Only the mother gives it.
Both parents must have Sickle Cell Trait for a child to have Sickle Cell Disease.
❌ Myth: It is a curse/witchcraft.
It is a genetic disease caused by what the child's body inherited from both parents. Your family is not cursed.
ℹ️ Concern: Other children?
It is important to consider getting your other children tested to know their status.
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