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Sickle cell anaemia, a genetic blood disorder, continues to pose a significant health challenge in Kenya, affecting people of all ages. The condition is characterised by abnormally shaped red blood cells that resemble a sickle, hindering their ability to carry oxygen efficiently. This can lead to a range of severe symptoms and complications.

Context

Sickle cell disease (SCD) is an inherited blood disorder that affects haemoglobin, the protein in red blood cells responsible for oxygen transport. In individuals with SCD, the red blood cells become rigid and crescent-shaped, leading to blockages in blood vessels and a reduced lifespan for these cells. This results in chronic anaemia and various painful episodes.

Kenya faces a substantial burden of SCD, with an estimated 14,000 children born with the disease annually. The prevalence is particularly high in regions endemic to malaria, such as Western, Nyanza, and the Coast, where 2 to 4 out of every 100 infants are affected. In some areas of Western Kenya, approximately 4.5% of children are born with SCD, and 18% carry the sickle cell trait. Without adequate care, 50-90% of children with SCD may not survive past their fifth birthday, according to the World Health Organization (WHO).

Common Signs of Sickle Cell Anaemia

While symptoms can vary in severity, several common signs are associated with sickle cell anaemia:

• Chronic Anaemia: Sickle cells have a shorter lifespan than normal red blood cells, leading to a persistent shortage of healthy red blood cells. This can cause fatigue, weakness, dizziness, and shortness of breath.
• Painful Episodes (Sickle Cell Crises): These are a hallmark of the disease, occurring when sickle-shaped cells block blood flow to various parts of the body, most commonly the chest, arms, legs, and back. The pain can range from mild to excruciating and last for hours to several days, sometimes requiring hospitalisation.
• Swelling of Hands and Feet (Dactylitis): This is often one of the earliest symptoms observed in infants with sickle cell anaemia, caused by blocked blood circulation in the extremities.
• Frequent Infections: The spleen, vital for fighting infections, can be damaged by sickle cells, making individuals more vulnerable to illnesses, some of which can be life-threatening. Vaccinations and daily antibiotics can help mitigate this risk.
• Jaundice: The rapid breakdown of sickle cells can lead to a yellowish discolouration of the skin and eyes.
• Delayed Growth or Puberty: Insufficient oxygen and nutrient supply due to impaired blood flow can hinder normal growth and development in children.
• Vision Problems: Tiny blood vessels supplying the eyes can become blocked by sickle cells, potentially leading to vision impairment.

Law/Policy

The Ministry of Health in Kenya has implemented strategies and policy interventions to mitigate the impact and reduce the burden of sickle cell disease. These efforts include promoting newborn screening and establishing comprehensive care centres.

Stakeholders

Organisations like the Academic Model Providing Access to Healthcare (AMPATH), a collaboration involving Moi Teaching and Referral Hospital, Moi University, and Indiana University, have been instrumental in improving comprehensive care for SCD patients in Western Kenya. They have screened over 25,000 children for SCD and trained 1,559 healthcare providers on its management. Patient support groups and advocacy alliances, such as the Alliance of Sickle Cell Anaemia Kenya, play a crucial role in raising awareness and educating society about the condition.

Evidence/Data

• Approximately 14,000 children are born with sickle cell disease in Kenya annually.
• In Western Kenya, about 4.5% of children are born with SCD, and 18% carry the sickle cell trait.
• The economic burden of SCD in Kenya is estimated at KSh 1.6 billion annually for managing 14,000 cases.
• Hydroxyurea treatment has been shown to reduce pain episodes by 45%, acute chest syndrome by 44%, and blood transfusions by 30%.

Risks/Implications

Beyond the immediate symptoms, sickle cell anaemia can lead to severe complications, including stroke, acute chest syndrome, organ damage (kidneys, liver, spleen), and pulmonary hypertension. The disease also carries significant psychosocial and economic burdens, including medical costs, discrimination, and unemployment for many adults with SCD.

Unknowns

While significant progress has been made, there remains a paucity of data on the exact number of people living with sickle cell disease across all regions of Kenya.

Timeline

• 2012-2019: AMPATH established a comprehensive sickle cell care program, expanding to eight counties in Western Kenya.
• March 13, 2025: Jaramogi Oginga Odinga Teaching and Referral Hospital opened one of the region's first dedicated sickle cell care units.

What to Watch

New gene therapies, such as Casgevy and Lyfgenia, approved by the United States Food and Drug Administration (FDA) in 2023, offer potential long-term cures for SCD. While bone marrow transplantation remains a curative option, it is often reserved for younger patients due to associated risks and the difficulty of finding compatible donors. Researchers are also exploring gene therapy and drugs to boost fetal haemoglobin production.

Related

The prevalence of sickle cell disease in Kenya often mirrors malaria endemic patterns, as carrying the sickle cell trait offers some resistance to severe malaria.