Did you know that Sickle Cell Disease (SCD) is an inherited blood disorder that affects millions worldwide?
In Zambia, it’s a pressing issue, with over 6 thousand babies born with the condition annually, adding to the 1-2% of the population already living with it.
The University Teaching Hospital (UTH) in Lusaka, which has the largest population of SCD patients, had over 6 thousand patients registered with it as of the end of 2019.
But what’s behind this growing number? SCD is caused by a gene mutation, inherited from parents who carry the faulty hemoglobin gene.
When both parents are carriers, the risk of passing it to their child increases. The disease causes red blood cells to become stiff, sticky, and crescent-shaped, leading to severe pain, anemia, infections, and organ damage.
It is a lifelong illness that requires constant management, but for many, accessing medication and treatment remains a challenge.
So, what’s being done to address this issue? According to Eric Chungu, a Nurse and Sickle Cell Advocate, awareness is key.
“Without people knowing their genotype, families unknowingly pass the condition to the next generation, and the cycle continues,” he said.
While there’s still a lack of awareness in some areas, especially rural ones, SCD has become more widely known, with more patients being admitted to health centers before the disease reaches its peak.
However, stigma and misinformation surrounding SCD create significant barriers for patients.
Mwanza Changala, an Advocate and Author, noted, false beliefs, such as the idea that the condition is contagious or caused by curses, lead to discrimination, social isolation, and delayed medical care.
“This misunderstanding leads to stigma, blame, and late diagnosis, affecting not just the patients, but also their families,” she said.
So, what’s the solution?
Changala emphasized that knowing your genotype is a simple yet powerful step towards prevention.
“It is simple but powerful information that can shape your future and protect the next generation,” Changala said.
“Sickle cell disease is preventable through informed decisions; awareness is not fear, but empowerment.”
The question remains: will we rise to the challenge? By spreading awareness, promoting genotype testing, and supporting those affected, we can pave the way for a future where SCD is a manageable condition, rather than a life-threatening one.
By Nkandu Manda,Lubuto Mapoma