Let’s make World Haemophilia Day count
Yesterday, Friday, April 17, 2026, was World Haemophilia Day, commemorated on the theme: “Diagnosis: First step to care".
This theme highlights the urgent need to identify the estimated 75 per cent of people with haemophilia and an even more significant gap for other bleeding disorders, implying that hundreds of thousands of people around the world still lack access to basic care.
It is heartwarming to know that we have the power—and the shared commitment—to change this.
We can do this by improving diagnostic outcomes by strengthening healthcare professionals' skills and enhancing laboratory effectiveness, particularly for bleeding disorders.
Despite years of spotlighting haemophilia, I’m not oblivious to the fact that not that many people have heard about haemophilia. The bad news is that it certainly does exist in Ghana and needs to be discussed. Why?
First, the disease is so significant worldwide that a day has been set aside to raise awareness of it. The world as we know it has become a global village, and Ghana cannot pretend not to be part of this village.
Secondly, the disease is important in Ghana to have warranted the formation of its society. Since the formation of the Ghana Haemophilia Society in May 2009, several people with this condition have been entered into the haemophilia register.
That there are a lot more unregistered haemophiliacs in the country is attested to by the fact that most people are not aware of the condition.
With a population of 33 million, it is estimated that there are about 7000 people in this country with the condition who need to be identified. So far, about 150 children and over 50 adults with haemophilia are receiving care at the Korle Bu Teaching Hospital alone.
Thirdly, since the establishment of the Ghana Haemophilia Society, a twinning program with a Haemophilia Treatment Centre (HTC) in the United States for skills transfer and treatment support has been established.
The society is a member of the World Federation of Haemophilia (WFH) and the president of this world body, himself a living with the condition, has already visited the country.
Is haemophilia a new disease? Certainly not! The earliest written reference to what appears to be haemophilia is encountered in Jewish texts of the second century AD. Rabbinical rulings exempted male boys from circumcision if two previous brothers had died of bleeding after the procedure.
The first modern description of haemophilia is attributed to Dr John Conrad Otto, a physician in Philadelphia, who, in 1803, published a treatise entitled "An account of a hemorrhagic disposition existing in certain families.”
However, the first use of the word "haemophilia" appears in a written account of the condition by Friedrich Hopff in 1828. Just as Gout is sometimes referred to as “the rich man’s disease”, so all is not gloomy for haemophilia, as it is referred to as “the royal disease” because several members of noble families in Europe were affected by it.
Haemophilia is a bleeding disorder arising from a deficiency or reduced levels of one of two clotting factors: Factor VIII (8) and Factor IX (9). Deficiency of Factor VIII leads to haemophilia A, while deficiency of Factor IX is known as Haemophilia B or Christmas disease, after the surname of the first child diagnosed with this condition. They both have similar clinical presentations.
The clotting factors are important proteins in the blood that work together to form a clot over a plug, strengthening it to stop the bleeding when there is an injury.
Due to the deficiency of either of the factors in haemophilia, blood is not able to clot, and bleeding continues longer than usual. It can be mild, moderate or severe depending on the level of the clotting factor.
Haemophilia is inherited, which means that it is passed on through a parent’s gene. It is located on the X chromosome, and since a male child inherits the Y chromosome from the father and an X chromosome from the mother, the disease tends to be seen more in male children.
It is rarely seen in females if a father with the disease marries a woman who is a carrier of the gene. In that case, there is a 50 per cent chance of giving birth to a female with the disease.
There are three females with haemophilia in the register at Korle Bu Teaching Hospital. A person with haemophilia will have it for life, as the level of the factors usually stays the same throughout one’s life.
The hallmark of the disease is bleeding that does not stop or lasts longer than usual. Bleeding can happen anywhere in the body, whether visible or not. Bleeding usually happens after an injury or surgery, but can also occur spontaneously.
The earliest clue that a child may have haemophilia is excessive bleeding after circumcision. One’s suspicion may also be heightened if the child bleeds excessively after routine vaccinations or bruises easily when he/she starts to walk.
The writer is a member of the Paediatric Society of Ghana and the Director of Medical Affairs of Korle Bu Teaching Hospital
