Kayode Adekunle, a male child barely eight days old when he was circumcised, a religious and traditional practice that men in our environment undergo.
But Kayode’s father, Adedayo Adekunle almost lost his son to the exercise. With the incision to remove the foreskin from little Kayode came bleeding that could not be stopped. The kid had to be carried from hospital to hospital in the attempt to stop the bleeding, which could not be stemmed as a result of a blood disorder called haemophillia.
The search to prevent his little son from bleeding to death took Adekunle to the Lagos State University Teaching Hospital (LUTH), Idiaraba in Lagos where after series of medical tests, Kayode was diagnosed with haemophillia.
Today, Kayode who is 11 -years old is a JSS1 student of the Divrel Comprehensive College in Lagos. He survived the condition, courtesy of Factor 8 provided free by the World Federation of Haemophillia (WFH). Thank God, he is able to manage the blood disorder and consequently lives a normal life. Kayode is just one of the over one million Nigerians living with haemophillia, which is a group of hereditary genetic disorders that impair the body’s ability to control blood clotting or coagulation, which is used to stop bleeding when a blood vessel is broken.
While one haemophiliac male is found in every 10,000 males, there is one in every 100,000 females.
To show that some people in Nigeria including Kayode are currently living with challenges posed by haemophillia, the 2012 World Haemophillia Day was marked in Lagos recently with an awareness walk and lectures on the challenges of haemophillia and management methods.
Similarly, the occasion was used to seek the support of both the federal and state governments in alleviating the plight of persons affected by the disorder.
The 2012 World Haemophillia Day was organised by the Haemophillia Foundation of Nigeria, which included, affected persons, families and relations of affected persons and others.
Speaking at the occasion, Chairman of the Haemophillia Foundation of Nigeria, Lagos State Chapter, Mr. Mich Madueke and also speaking too at the event, a Consultant Paediatric Haematologist/ Oncologist, Dr. Edamisan Temiye who is a medical adviser to the group, said Nigerians should understand that there are people with this problem living among us.
The two speakers/experts noted that a child can live with haemophillia and still achieve a fruitful and fulfilling life if the condition is well managed, hence, the need for support from both society and the government.
The duo urged the federal and state governments to support the people bearing this challenge so as to encourage the World Federation of Haemophillia to do more in the provision of free, but expensive Factor 8, which is for the management of the condition in affected persons.
According to Madueke, Nigeria enjoys the donation of Factor 8, which is supplied freely, but comes in small quantity. “Why the supply of this Factor 8 is in small quantities , is so because the Foundation does not have the support of the Nigerian governments,’ he lamented.
According to the consultant paediatric haematologist/ oncologist, “An ample of Factor 8 costs N75,000 and a child may need more than 10 amples or up to 50 amples to check bleeding in a particular instance and consequently prevent death,” adding that no average Nigerian patient can afford the medication.
However, Madueke said, “If government steps in, it will encourage the World Federation of Haemophillia to do more than they currently do.”
Highlighting the role of legislation in the management of the disorder, Dr Temiye said there is need to have a national way of identifying persons living with haemophillia so that at accident scenes, they can get quick medical attention that would stop them from continuous bleeding and save their life.
Similarly, based on the provisions in the legislation, parents and guardians of affected persons would be obliged to notify school authority about the risks affected persons face when exposed to corporal punishment and football games in school settings. “Little trauma in these group of Nigerians can easily lead to death,” lamented Temiye.
To prevent this type of trauma, the chairman of Haemophillia Foundation of Nigeria advised anyone who observes a bleeding disorder to report to a health facility where they will be referred to relevant hospitals for treatment.
The theme of the 2012 World Haemophillia Day is, “Close the Gap”, which is necessitated by the fact that 75 per cent of people with bleeding disorders around the world have inadequate treatment or no treatment at all. “Unfortunately, Nigeria falls among the group,” said Temiye.
However, in closing the gap, the Haemophilliac Foundation of Nigeria used the occasion to create awareness about the condition with a view to achieving better treatment and management outcome and also to bridge the gap between the people who know about this condition and those that do not know.
Narrating her experience, the mother of one little Esther Uchegbu, a- 9year old girl, who lives with haemophillia said when her daughter was three years old, a minor fever left her with swelling all over her body. In the search for cure, Mrs. Uchegbu told LEADERSHIP that she sought care in several hospitals until a doctor’s referral took her to LUTH, where her daughter was diagnosed with haemophillia. Since then, the severity of the disorder in Esther, who is now nine years old, is usually contained with the recommended medication.
• Among creeping children, haemophillia is characterised with swellings in knees, ankles and other parts of the body.
• A haemophilliac child who hits his head on the wall will experience persistent swellings in the affected part of the head.
• Swelling and bruising from bleeding in the joints, soft tissue, and muscles may also occur.
Children with mild haemophilia may not have noticeable symptoms for many years.
• Often, the first sign in very mild haemophiliacs is heavy bleeding from a dental procedure, an accident or a surgery.