Improvements in managing haemophilia shared

A lot of people may be unaware of the genetic disorder called haemophilia which is why an informative round-table discussion on the disorder was held at Emoyeni Conference Centre in Parktown. The discussion was held on the day before World Haemophilia Day which was on 17 April, hosted by Roche Pharmaceuticals.

Professor Johnny Mahlangu, from the Department of Molecular Medicine and Haematology at Charlotte Maxeke Hospital, explained that haemophilia is an inherited bleeding disorder whereby ‘upon injury, absence of a certain protein or interruption causes non-stop bleeding because the blood is unable to clot’. He added that people with haemophilia (PWH) bruise easily with joint bleeds being the hallmark of the disorder.

Genetic counsellor and mother of a person with haemophilia, Julian Malan, shared the story of her son and said she had no prior knowledge of what it entails to raise a child with haemophilia before giving birth to him. “In the first three years of his life I noticed he bruised very easily and even when I picked him up after sitting down, he would have red patches on the bum. He had 16 bleeds on his right ankle in 2008 and after his third birthday our household was put on prophylaxis by the state hospital we attended,” said Malan.

She said the prophylaxis (giving clotting factor concentrates in order to prevent bleeding) required the whole family’s ‘buy-in’ in order for it to work and their doing so led to a more normal life thereafter.

“Now my son is old enough to take the prophylaxis himself as he can inject himself with the factor. He gets to go on holiday and do activities (except for rugby) like other normal children,” Malan said.

She, however, said she had to set up a meeting with teachers to explain haemophilia when her son started school and would do the same when he started high school but also adding that he was perfectly normal.

Dr Nick Mangeya from Roche said this year’s Haemophilia Day theme is Reaching Out and Roche had spent ‘a lot of time researching how PWH can accept and express their reality; highlight how bleeding impacts their daily lives as well as how they can manage the disorder’.

A representative from the South African Haemophilia Foundation, Alex Stewart, said the foundation aims to maintain and improve the level of expertise and treatment facilities in SA as well as support initiatives to find a cure.

“We have 800 trained practitioners in the region and also the web-based South African Bleeding Disorders Register which will be launched in July. The app will enable people to enter cases and load them onto the system so as to improve interaction and level of care and treatment.”

Details: Roche www.roche.co.za; South African Haemophilia Foundation www.haemophilia.org.za

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