Haemophilia, a rare genetic blood disorder that causes blood not to clot properly due to lack of clotting factors, affects an estimated 5,300 Kenyans.
According to statistics from the Kenya Haemophilia Association, one in every 10,000 Kenyans suffers from haemophilia.
As World Haemophilia Day is marked, patients in Kenya continue to face a number of challenges such as inaccurate diagnosis, high cost and scarcity of treatment facilities, and limited awareness about the condition both among the public and within the healthcare system.
Haemophilia can cause continuous bleeding both internally and externally due to the absence of blood clotting proteins. Patients experience prolonged bleeding even from minor injuries, and in severe cases, spontaneous internal bleeding into joints and muscles, which can lead to permanent disability if left untreated.
In cases where haemophilia is undiagnosed, even minor injuries or surgeries can lead to serious internal bleeding, which can be life-threatening.
The main symptoms of haemophilia are easy bruising, having large bruises, and greater than normal bleeding from surgery or menstruation.
Kenya Haemophilia Association Chairman Dr. Kibet Shikuku notes that the disease arises from a lack of clotting factors, which is a function of the X chromosome. Both men and women have an X chromosome, with women having two (XX) and men having one. (XY)
Since women have two X chromosomes, one steps into place and aids in clotting blood in case the other is abnormal stopping unnecessary bleeding. The disease is prevalent in men since they only have one X chromosome but women are also affected.
Females who inherit a gene for haemophilia often have an unaffected gene on their other X chromosome. This means that while they can pass on the gene for haemophilia to their children, they may not be affected by haemophilia themselves.
This year’s theme “Access for all: Women and girls bleed too” seeks to raise awareness of challenges faced by women and girls with bleeding disorders.
Many women and girls continue to suffer from prolonged bleeding episodes, misdiagnoses, and insufficient care as haemophilia has often been viewed as a male condition.
Women with haemophilia have additional concerns related to menstruation, pregnancy, and childbirth, which can complicate their condition and require tailored medical care.
Shikuku notes that Haemophilia is not curable since it is a genetic disorder however early diagnosis and appropriate treatment are essential to manage the symptoms and avoid severe health issues.
“There is no cure for haemophilia, but heavy bleeding can be controlled with medical treatment. It is crucial to seek treatment early if you come from a family where bleeding is common. We encourage you to go for screening to determine the cause,” he said.
Currently in Kenya two major types of the disorder are most prevalent including, Haemophilia A and Haemophilia B.
Haemophilia A (also called classic haemophilia) is the most common type and is caused by a lack of or low levels of the blood clotting factor 8.
Haemophilia B (sometimes called Christmas disease) is caused by a deficiency of or low levels of blood clotting factor 9.
World Haemophilia Day, marked annually on April 17, seeks to raise global awareness about haemophilia and other inherited bleeding disorders and promote better diagnosis and access to treatment.
By Rop Janet
