In an effort to educate the community about haemophilia, a round-table discussion with experts as well as those living with haemophilia took place at Emoyeni, Parktown on 16 April.
This was in commemoration to World Haemophilia Day on 17 April, as Roche, a pharmaceutical company, opened the panel discussion and presentation with media as their aim to spread the word about haemophilia and how the diagnosis has impacted those living with the condition.
Professor Johnny Mahlangu, the head of haemophilia at Charlotte Maxeke Academic Hospital in Johannesburg led the conversation alongside haemophiliac patient Alex Stewart from the South African Haemophilia Foundation and Julie Malan, a parent of someone living with haemophilia.
According to research, Mahlangu explained that 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 and is generally an inherited disease.”
Mahlangu, a renowned figure in the study of haemophilia and also the head of Pathology at the University of the Witwatersrand, completed in-depth research on haemophilia and participated in clinical trials on the disorder.
In his presentation, Mahlangu gave valuable insight into what the disorder was and how haemophilia is prevalent in men while women are the carriers of the disease, and how haemophilia affects 2 000 people living with the disorder in the country.
Stewart gave more insight to what South African Haemophilia Foundation does and how they work hand-in-hand with the department of health while Malan gave her input on what life was like living with a child diagnosed with haemophilia A.
How did you commemorate World Haemophilia Day? Tell us on the North Eastern Tribune
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