Hemophilia is a serious genetic bleeding disorder that affects thousands of people worldwide. In commemoration of World Hemophilia Day that is celebrated yearly on April 17th, health experts gathered in a virtual round table to raise awareness of the disease, and the need for improved access to treatment and care . The virtual media round table was organized by Pfizer, a visionary partner of the World Federation of Hemophilia for WHD.
Professor Sulaimon Akanmu of the Lagos University Teaching Hospital (LUTH), Idi-Araba, spoke about the need for innovation in access to hemophilia treatments for patients. He noted that hemophilia tends to occur in males due to the inherited X chromosomes from their mother. Although recent studies have shown that females can suffer from mild hemophilia, severe hemophilia is a condition mostly identified amongst men. People with hemophilia are at risk for excessive and recurrent bleeding from modest injuries, which have the potential to be life-threatening.
“People with severe hemophilia often bleed spontaneously into their muscles or joints, or rarely into other critical closed spaces such as the intracranial space, where bleeding can be fatal,” he said.
Despite the seriousness of the disease, Akanmu revealed that knowledge and diagnosis of hemophilia was low among the population, including healthcare workers. This is responsible for under diagnosed hemophilia cases in the country. He further explained that there is a need to increase awareness of hemophilia among the general population, as lots of male children are dying at a young age.
Akanmu advised that the moment you sever the umbilical cord and that spot is oozing blood for too long or not healing on time, you can suspect hemophilia. To this end, the Hemophilia Federation of Nigeria is taking steps to sensitize pregnant women and healthcare workers at health centers on the existence of hemophilia and how to identify it in children at young ages.
The World Federation of Hemophilia (WFH) is working in partnership with hemophilia treatment centers in 29 African countries to share knowledge and build global awareness through information exchange, education, and training. The WFH provides about 24 million units of clotting factor concentrates per year to patients in sub-Saharan Africa through humanitarian aid programmes.
Furthermore, Pfizer is a visionary partner of the World Federation of Hemophilia for WHD and has lent support to the cause. The company has joined in the call to improve access to treatment and care for all people with bleeding disorders.
The experts present at the virtual media round table called for increased awareness and understanding of hemophilia disease among healthcare workers and the general population. This would ensure timely diagnosis and effective treatment of patients. Governments were urged to improve access to treatment and care for all people with bleeding disorders, with an emphasis on better control and prevention of bleeds.
The theme for this year’s World Hemophilia Day was “Access for All: Prevention of Bleeds as the Global Standard of Care.” Hemophilia affects thousands of people worldwide, and it is essential to raise awareness of the disease to prevent and control it. With increased awareness and understanding, timely diagnosis and effective treatment of patients would be possible, thereby improving the quality of life of those living with the disease.
The importance of spreading awareness of hemophilia disease, as highlighted by experts, is to ensure that those living with the disease receive adequate treatment and care. Governments must make efforts to improve access to treatment and care for all people with bleeding disorders, and healthcare workers must be knowledgeable on the diagnosis and treatment of the disease. The call to action for this year’s World Hemophilia Day was clear: Access for all and the prevention of bleeds should be the global standard of care.