World Haemophilia Day – what you need to know about the medical condition

TODAY is World Haemophilia Day, and we spoke to the South African Haemophilia Foundation (SAHF) to share insight on this medical condition. The theme of the event this year is ‘Access for All: Prevention of Bleeds as the Global Standard of Care’.

Julie Malan, SAHF administrator, said haemophilia is an inherited bleeding disorder that prevents blood from forming a stable clot.

“A person with haemophilia has little or no clotting factor. The most common type of haemophilia is Haemophilia A where a person has little or no factor VIII.”

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According to Malan, when a person with haemophilia is injured, they will have prolonged bleeding because they do not have the factor needed to make a solid clot.

“It is mostly men who are diagnosed with haemophilia, but some carrier women also have low levels of factor VIII or IX,” she said.

Asked about what causes it, Malan said people are born with haemophlila – they cannot catch it from someone.

“It is usually inherited, meaning it is passed on through the mother’s genes – X-linked recessive inheritance. The gene for haemophilia is on the X-chromosome. When a carrier mother has a baby, there is a one in two chance that she will pass haemophilia to her sons. Her daughters have a one in two chance to be carriers like their mother,” she said.

Malan added that it is not preventable but treatable.

“It is treated by replacing the missing clotting factor through an intravenous infusion (infusion into a vein). Previously, patients with haemophilia were treated on-demand – meaning they only received treatment when they had a bleed.

“However, the golden standard for treatment is prophylaxis treatment where a person is given a clotting factor three times a week intravenously to prevent bleeds. Unfortunately, not all patients with haemophilia in South Africa have access to prophylactic treatment.”

She said the worst thing when you have haemophilia is that bleeding can happen anywhere in the body, and sometimes it can be seen and sometimes not.

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“Bleeding can happen after surgery or injury, but sometimes it can also happen spontaneously. Patients with haemophilia can also bleed into their joints and muscles. Repeated bleeding into joints can cause permanent damage if not treated properly and quickly – it can lead to disability.

“Some bleeds can also be life-threatening. These include bleeding in the brain (intracranial bleed), bleeding in the throat, and bleeding in the gastrointestinal tract,” she said.

To find out more or if you need help, contact the South African Haemophilia Foundation or email sahfadmin@haemophilia.org.za or visit the website www.haemophilia.org.za.

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