25 Apr 2022

There is urgent need to teach people about haemophilia a rare but life-threatening genetic disease, particularly how to identify it in children, a Pediatric Oncologist has said. 

Dr Robert Kimutai of Baylor Children’s Clinical Centre of Excellence, said this when giving a keynote address at the World Haemophilia Commemoration, organised by the Seventh Day Adventist Hospital in Kanye over the weekend. 

Explaining the condition, Dr Kimutai said a person with the condition bled excessively due to a mutation or development of inhibitor antibodies that prevented the  body  from building  normal amounts of clotting proteins. 

He thus called for advocacy towards the welfare of sufferers , adding it was critical for policy makers especially, to be sensitised inorder for them to lobby inclusion into national policy, provisions relevant to it. 

Among the issues for advocacy should be provision of social grants to patients diagnosed with haemophilia, as they are unable to work owing to the disease, he said. 

He said: “By raising awareness we will be able to ensure that we have sustainable and equitable access to diagnostic care and that all suspected cases are tested and provided with treatment”. 

Dr Kimutai said that haemophilia was hereditary and rampant amongst boys, affecting one in 5000 children. Botswana had 300 known sufferers, while a large number remained undiagnosed and were therefore not aware that they had the disease. 

“It therefore remains a concern that there are risks of death from lack of basic knowledge both across the world and in this country,” he said. 

He added most people were aware of the signs, but did not know that they had the disease, while others did not know that treatment was available. 

Dr Kimutai said currently, Princess Marina Hospital provided testing as well as care and treatment for haemophilia patients through a Public Private Partnership between the Ministry of Health and Baylor Clinic. 

The plan was to extend services across the country, he said. 

The clinic, he said, offered one of the best treatments available. 

It  included replacement of the missing blood clot factor, leading to normal clotting. He advised people not to panic after receiving a diagnosis for this disorder as it was possible to lead a comfortable and fulfilling life with it. 

“Living with haemophilia is a daily challenge that can seem overwhelming at times, [but]…the support of family and friends can help in dealing with anxiety surrounding the disorder,” he said. 

Symptoms included repeated vomiting, severe headache, blurred vision, injuries that continually bleed, neck pains and extreme fatigue, he said, and urged people who experienced these to seek immediate medical attention.

“When these symptoms are left untreated, they can lead to chronic joint disease and pain, bleeding in the brain, seizures, paralysis and death,” he said. 

Dr Kimutai also said that exercise,  a balanced diet, practising good hygiene and taking additional safety measures could potentially reduce the symptoms as well as their frequency and severity. 

For his part, Seventh Day Adventist Hospital,  Chief Executive Officer, Dr Brendan Tombs said the World Haemophilia Day was commemorated to raise awareness about the disorder. 

He said the commemoration was held in Kanye in recognition of the fact that many of known haemophilia patients in Botswana were in Kanye. 

Dr Tombs said there was need to educate the community about the disease, as most people were not aware that they had it and were therefore unable to access medication, which posed a serious threat to their lives. 

The event was held under the theme: Access for all, Partnership, Policy and Progress. Ends