Dispel myths around sickle cell disease
In Kenya, 14,000 children are born with sickle cell disease yearly.
The theme of this year’s World Sickle Cell Awareness Day, celebrated every June 19, is “Bridging the gaps towards optimum care and control of sickle cell disease”.
Sub-Saharan Africa is heavily affected by Sickle Cell SCD, which millions of people get. But as we raise awareness of and bridge the gap in care and control by advocating optimum care and management of SCD, let us dispel myths and misinformation which results in stigma and cultural practices borne out of ignorance.
SCD is one of most common illnesses in Africa but receives inadequate attention. Investment in SCD services can save many lives. SCD is an inherited blood disorder that shortens the life of red blood cells, causing anaemia.
In Kenya, 14,000 children are born with SCD yearly. Without routine newborn screening and treatment, 50-90 per cent of those born with the condition die undiagnosed before age five. SCD can be managed by simple interventions like high fluid intake and folic acid supplementation.
The government’s public health interventions can reduce the SCD burden through better awareness, research, disease prevention and early detection. This horrible disease is the most unknown, unaddressed, and underfunded in Kenya.
SCD patients often have to fight for equal treatment. When seeking medical care, they are forced to navigate healthcare provider interactions regarding pain perception, stigma around drug addiction and appropriate dosing of pain medicines.
Across the world, millions of people who live with the disease are managing their pain and fighting to live normally.
While the burden of better-known and -funded diseases declines, SCD should no longer be excluded from major policy action. Countries should implement screening at birth, integrate comprehensive SCD care into health systems, improve provider and patient education, and reverse structural racism and discrimination through focused policy and funding. SCD patients have long been calling for change. Take action.
Philip Ngotiek & Leticia Afandi, Migori
