Weekend Argus (Saturday Edition)
Haemophilia: a very bleeding disorder rare
It is a lesser-known ailment that affects males, resulting in an inability of blood to clot
FROM an early age, Andrew Tshakombu, 28, faced challenges that would have stopped many kids, but somehow he always found a way to excel.
Tshakombu was born with haemophilia – a rare bleeding disorder – but wasn’t diagnosed until he was 6, when he twisted his ankle.
His bleeding at the time was so severe that he needed a blood transfusion and urgent medical attention to treat him.
From that day, the field engineer says his life has not been the same. “I tried being a normal child, playing soccer or running but that always leads to me needing medical attention,” says Tshakombu.
This week marked an end to World Haemophilia Day, which is commemorated on April 17 each year.
It is a day that shines a spotlight on a rare bleeding disorder that doesn’t get much attention, considering the impact it has on the lives of those who live with this condition.
According to the World Federation of Haemophilia, haemophilia is a rare bleeding disorder, affecting males. It is estimated that 1 in every 10 000 boys are born with it.
While there is significant information available on haemophilia, the majority of South Africans still do not have a great understanding of what it is and the options that are medically available to deal with it.
There are two types of haemophilia: 1 in 10 000 male births have haemophilia A – this means the person doesn’t have a sufficient clotting factor. The second one, affecting 1 in 50 000 male births, is haemophilia B – this means the person doesn’t have sufficient clotting.
Novo Nordisk South Africa says Haemophilia A is an inherited genetic disorder, where a person’s blood does not clot properly.
This means people living with Haemophilia A experience uncontrolled bleeding, which especially affects their joints. In more severe cases, people living with haemophilia experience bruising frequently, along with bleeding inside the joints or the brain. This is caused by the lack of a clotting factor within the bloodstream.
People with haemophilia experience internal bleeding, often around the joints and muscles, which causes pain and stiffness, limited mobility, and reported psychological or psychiatric conditions. These effects can have a negative impact on missed schooling days, absence from work and inability to fulfil daily workplace obligations, therefore directly affecting a household’s income.
As an adult, Tshakombu has learnt to live with the condition.
“Although this condition is limiting. I still live my life to the fullest. I try to go to the gym to be stronger. I eat healthily as much as I can to help me live longer. This condition is manageable and, when you have information about it, you can conquer it,” says Tshakombu.
He advises that the public get medical help if they show symptoms such as big bruises, bleeding into muscles and joints, spontaneous bleeding (sudden bleeding in the body with no clear reason), prolonged bleeding after getting a cut, removing a tooth, or having surgery, and bleeding for a long time after an accident, especially after an injury to the head.