Many people in Kenya may be living with an undiagnosed rare bleeding disorder known as hemophilia, which may put them at risk in emergency cases.
People with hemophilia have a defect in a gene that regulates the production of proteins called clotting factors, causing spontaneous and severe bleeding following injuries or surgery. Hemophilia A is caused by a lack of blood clotting factor VIII, while those with hemophilia B lack factor IX.
About 80 percent of the patients who underwent hemophilia testing at AAR Hospital on Thursday tested positive for the disorder, highlighting the high rate of undiagnosed cases in the country and underscoring the urgent need for wider screening, increased awareness, and early intervention programmes.
The majority of those diagnosed have hemophilia A, also known as classic hemophilia, which is the most common type.
Hemophilia is a genetic bleeding disorder that affects the body's ability to form blood clots, leading to prolonged bleeding, joint and muscle damage, disability, and, in severe cases, life-threatening complications.
It affects approximately one in 10,000 people worldwide. In Kenya, it is estimated that more than 5,000 people mostly men and boys are living with bleeding disorders. However, only about 900 are currently receiving treatment and less than 500 are on long-term prophylactic therapy.
"There are two main types of hemophilia: Type A and Type B, which are caused by deficiencies in clotting factors VIII and IX, respectively.
The most effective treatment remains the replacement of the missing clotting factor by infusion. This significantly helps to prevent spontaneous or injury-related bleeding and improves patients' quality of life. We're working with institutions like the WFH (World Federation of Hemophilia) Kenya Chapter to ensure continuity of care," said Joseph Sumba, a hematologist at AAR Hospital.
The primary risk factor for hemophilia is genetic inheritance. Because the faulty gene responsible for hemophilia is located on the X chromosome, the disorder predominantly affects males, while females are usually carriers.
However, some women and girls may develop symptoms or hemophilia themselves, especially if the gene mutates spontaneously or if both X chromosomes carry the defective gene.
Other, albeit rare, risk factors include acquired hemophilia, which can occur in adults due to autoimmune disorders, certain medications, pregnancy, or underlying health conditions such as cancer.
"A multidisciplinary approach is essential. Patients need psychosocial support, physiotherapy, and occupational therapy to address both the physical limitations and the emotional burden of living with a chronic bleeding disorder," said Dr Sumba.
He also urged the government to include rare diseases such as hemophilia in public health programmes.
This includes equipping public facilities with diagnostic equipment and therapeutic products, training health professionals throughout the country, and fostering partnerships with global organisations such as the WHF to improve service delivery, affordability, and access to care.
