© 2019 - International Centre for Investigative Reporting
Haemophilia: Rare but affects Nigerians, group seeks govt support
WHEN the six-year-old Trust missed school on Tuesday to join Haemophilia Foundation of Nigeria (HFN) for an awareness campaign in Abuja, his father also had to take the day off at work.
The HFN, a non-governmental organisation that advocates on behalf of all Nigerians with blood disorders, has set aside November 18 to 24 as the national Awareness Week for the bleeding disorders in Nigeria.
The march that took off at the National Hospital, Abuja on Tuesday morning was a crowd of persons living with haemophilia, relatives, nurses, doctors and other individuals that seek an end to the disorder.
The group had later marched to the Federal Ministry of Health at the Federal Secretariat Complex.
Olawole Omitola, the foundation’s program officer told The ICIR that the awareness aims to seek the government’s attention on the disease. She said the government has not supported the treatment and management of persons with the disorder in the country, adding that there was no national plan to address the condition.
“So we are at the Ministry of Health so as to get the attention of the minister to allocating funds for the treatment of this condition,” she said.
Having identified over 450 Nigerians with haemophilia, the foundation said more were not aware of their conditions as 97 per cent remain undiagnosed. “Nigerians with bleeding disorders remain with little or no treatment at all,” it noted.
Haemophilia is a bleeding problem. People with haemophilia bleed for a longer time. Their blood does not have enough clotting factor, a protein that controls bleeding. It is a rare condition that usually affects a male person whereby any injury on the body would result to prolong bleeding.
Ojetunde Bolanle, a doctor in the department of haematology unit of National Hospital, Abuja said most parents do not know of their children disorder until the circumcisions are carried out where the cut could not stop bleeding. She said the continuous bleeding could lead to death when professional healthcare was not received.
Bolanle said it is important to identify babies with the condition immediately after birth to avoid unnecessary bleeding that could result in death.
“Sometimes, they bleed to death. It’s a very dangerous disease to have, she said adding that People with haemophilia could bleed inside or outside the body.
Most bleeding in haemophilia occurs internally, into the muscles or joints, she said..
“Bleeding into particular joint overtime make walking difficult. You can see people with bow legs, bent legs, and some already retired to wheelchairs”.
The doctor said about 50 people have registered with the National Hospital for treatment of the disorder. According to her, the cost of the treatment for a person in crisis could be as high as N250,000, which could be every week, monthly, yearly depending on the severity of the individual condition.
“Children that are yet to be identified could bleed to death. After circumcision, if they are lucky enough they just give them blood transfusion when what was necessary was the real treatment to avert complications.
“We need support from the government to make sure people are not dying unnecessarily,” she said.
Alayo Sopekan, the National Desk Officer of haemophilia and sickle cell disease at the Federal Ministry of Health while addressing the group at the Ministry encourage them to forward their concerns to the National Assembly. He said the ministry could do only but a little if the National Assembly does not approve a plan proposed to manage the condition in the country.
“It (the campaign) should not be restricted to the Ministry of Health because the thing is we can have good plans for you but if we send the plan to the National Assembly, who are your representatives, and those things are not approved, is there anything we can do?” he said.
But Sopekan assured the foundation that the government would address the issues surrounding haemophilia in the country. He agreed that the government needs to adopt a national roadmap for the treatment and management of the disorder.
Trust who had took the day off from school today held his banner all through the street campaign. It reads “Nothing about us without us”. His father told this reporter that the awareness was necessary in order to make sure that unborn children do not inherit the condition
Other children, teenagers and adults with the disorder that were present including their caregivers all held placards and pamphlets that narrated some of their experiences. Many had travelled from other towns to the Federal Capital Territory.