Cape Town – As World Haemophilia Day (#WHD2023) is observed under the theme “Access for All: Prevention of bleeds as the global standard of care”, health activists are trying to raise awareness of some of the realities of the lesser-known disease.
Haemophilia is a blood disorder where the blood does not clot properly, which can lead to a person bleeding severely.
Bleeds can occur internally, into joints and muscles, or externally, from minor cuts, dental procedures or injuries.
It is caused by a mutation, or change, in one of the genes that provides instructions for making the clotting factor proteins needed to form a blood clot.
This essential blood clotting protein is called Factor VIII, also known as anti-haemophilic factor.
Haemophilia affects all races and ethnic groups but occurs almost exclusively in males due to the hereditary nature of the condition.
Clerment Masoabi Sefojane, a young adult living with severe haemophilia and chairperson of the the South African Haemophilia Foundation (SAHF) said: “World Haemophilia Day serves as an opportunity to raise awareness about bleeding disorders, advocate for access to care, and mobilise resources towards addressing the challenges faced by patients with bleeding disorders, particularly in rural and underdeveloped communities.”
While he said haemophilia cannot be cured, people with haemophilia could live normal lives.
Treatment involves replacing the missing blood clotting factor with a concentrate administered by injection so that the blood can clot properly.
“It is essential to understand that haemophilia is a condition that requires a multi-disciplinary treatment approach, including physiotherapy, rehabilitation, and mental health support.
“However, due to the lack of education and access to care, many people in underdeveloped communities are unable to get the proper treatment they require,” Sefojane said.
Dr Nick Mangeya, country medical director and Africa Genomics Programme Partnerships lead at Roche South Africa, added: “Education and access are the most powerful tools in addressing haemophilia.
“As healthcare providers, we are working to support patients’ understanding of their condition by spreading improved, useful and accessible information about the disease.
“Patients with haemophilia can live better lives through improved management of their condition.”
Doctors further advise getting treatment as soon as possible in cases of injury, to help reduce the risk of damage to joints, muscles, and other body part.
Cape Times