Uganda today joins the rest of the world to mark Sickle Cell Day. Sadly, Uganda has no idea of the extent of the prevalence of sickle cell anaemia among Ugandans. Yet, the illness, which makes red blood cells become rigid, sticky, and shaped like sickles and die prematurely, creates chronic shortage of red blood cells in the body.
The illness remains the most common inherited blood disorder in Uganda. But 2013 statistics from the UN Social and Economic Affairs Division indicate 7.5 million of 37.8 million Ugandans carry the sickle cell gene. And the United Nations Children’s Emergency Fund says 141,000 children below five years in Uganda die annually of the disease. Worse, more than 33,000 of our babies are born yearly with the life-long condition.
These figures justify recent efforts by the government to carry out a countrywide survey to establish the prevalence and burden of sickle cell disorder (SCD). Ugandans should as well prioritise SCD, which often leads to stroke and damage to nerves, kidney and liver. Concisely, the injurious disorder can cut short our lives without the due precautions.
So, Ugandans should improve the quality of life of our children who needlessly die of the disease. One sure way, as the coordinator of early infant diagnosis, Dr Charles Kiyanga, said, is to start with early infant diagnosis at birth, and at first health facility contact for babies to improve childhood survival since the illness can be identified and managed early.
What is more, because there is no lasting treatment against SCD, the best Uganda can be doing is stop the disorder by mass awareness. The maiden issue of The Sickle Cell Journal, January – March, 2008, Vol. 1, No. 1, warns that increased incidence of SCD is not only because of ‘sicklers’ but is also because of those with the trait or carriers.
As the journal points out, carriers harbour unknown to them, the blueprint for producing, promoting and sustaining SCD. And because SCD is one of the most painful, emotionally-draining and energy-sapping illness, Ugandans should support the people living with it.
For instance, Ugandans should reduce the incidence and counsel couples who intend to marry to screen for SCD to ensure compatibility because unions of couples with the traits deliver children with SCD, namely two carriers have a 25 per cent chance of having an unaffected child, 50 per cent chance of having a carrier child, and 25 per cent chance of having a child with sickle cell anaemia.
Similarly, the Sickle Cell Association of Uganda should publicise and share widely experiences on SCD to help sufferers and caregivers cope. In the end, all of us can help defeat fear of SCD and help Ugandans with the condition survive and achieve their life’s dreams.