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Silent medical condition that kills quietly

Bruises and minor cuts might not concern many; however, for people with haemophilia, a rare bleeding disorder, these can be fatal. Bleeding in joints and muscles can cause stiffness, pain, severe joint damage, disability, and sometimes death.

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An estimated 6.9 million people have a bleeding disorder, yet 75 per cent of them don’t know it. According to the Kenya Haemophilia Association, at least 4,000 Kenyan men have a bleeding disorder but 90 per cent are not aware.

Currently, there are only 650 haemophilia patients registered in the country leaving out a chunk of patients who have never accessed treatment.

This was revealed during the recent World Haemophilia Day, which is marked every April 17. Haemophilia is a genetic disorder that impairs the body’s ability to control blood clotting or coagulation. Haemophiliacs can suffer from uncontrolled bleeding even from minor injuries and bleeding in joints, muscles and organs. These genetic disorders occur more in males than females. However, women who have the defective genes will most likely become carriers and can give birth to haemophiliac males and females who are haemophilia gene carriers.

Caroline Mutindi, a teacher at Bishop Ndingi High School in Mwala, got to know about haemophilia when her son, Lance Mwendwa, was three and after he injured his knee after a fall.

“When he was born, he did not have any problems. I later noticed that after injections, the swellings would remain for long. When he hit something he developed swellings and they worsened when he was crawling and learning to walk,” she says.

She says family members abandoned her as they believed Lance’s condition was the result of witchcraft or a curse. She even sought divine intervention and had libations poured on her son. With time, the knee healed and she thought the prayers had worked. But the problem recurred a few weeks later in 2012.

Unable to bear her son’s excruciating pain, Mutindi packed and travelled that very night to Nairobi to seek treatment.

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After some blood tests at the Kenyatta National Hospital, Mutindi and son were asked to go home to await results, but the following day, they were back in hospital, Lance’s stomach was inflamed. “It was then they realised he was haemophiliac.”

She was inconsolable but with time and after meeting other parents whose children are haemophiliacs she accepted the situation. The condition can be fatal as it can make one handicapped following an untreated internal bleeding on the knees and elbow joints or even kill.

Doctors and health experts say awareness about the disease is still low. An haematologist at KNH, Dr Kibet Shikuku, says due to lack of awareness, it takes long before one is diagnosed with the bleeding disorder.

Haemophilia is treated by replacing the missing factor using concentrates, fresh frozen plasma or cryoprecipitate acid to enhance clot formation and fibrin glues that help the clot to stabilise. Factors Eight and Nine are blood-clotting proteins needed to save haemophiliacs’ lives in case of an injury.

Dr Kibet says the factors are not easily available and even when they are, the price is too high — a single dosage of the concentrates cost Sh50,000 and an adult may require a minimum of two doses in a day which cost Sh100,000, an amount that very few patients can afford.

To make it worse, only two public hospitals offer this treatment — KNH and Moi Teaching and Referral Hospital. These are supported by donations from World Federation of Haemophilia and individuals.

Photo: Jeff Ochieng
 

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