By Leonard Masauli
As Malawi grapples with limited specialist care and low awareness of genetic disorders, patients living with sickle cell disease continue to endure pain, stigma and high treatment costs, raising questions about whether premarital genotype testing could help protect future generations.
Sarah Charity Kumwenda, 30, from Luwinga Township in Mzuzu, knows the burden all too well.
She and her sister are living with sickle cell disease, while their first-born brother died from the condition after inheriting the gene from their parents.
Growing up, Sarah says she faced stigma and discrimination both from teachers and fellow learners.
“Sometimes my eyes turned yellow and that attracted insults. I was forced to change schools just to continue learning in peace,” she recalls.
Despite the challenges, she completed secondary school at Our Lady of Wisdom and was selected to pursue Computer Science at Chancellor College, a constituent college of the University of Malawi.However, in 2017 she fell seriously ill and stayed away from campus for two years, eventually failing to continue with her studies.
After recovering, she moved to South Africa where she enrolled at Damelin University in 2023 to study a Diploma in Information and Communications Technology.
Sarah says managing sickle cell disease is expensive and emotionally draining. Doctors have advised that a bone marrow transplant in India, costing over US$25,000, could cure her condition — an amount far beyond her family’s reach.
Efforts to raise funds through online campaigns have yielded minimal support.
Their mother, Rank Nkosi Kumwenda, a single parent of six children, says caring for three children born with sickle cell has been financially and emotionally exhausting.
“When they fall sick at the same time, it is frightening. Sometimes hospitals run out of medication, and buying it privately costs about K80,000 for three months,” she says.
She recently graduated with a Master’s degree in Education from Mzuzu University, hoping to inspire her children to persevere.
Sarah now runs an online advocacy platform called “Sarah the Sickle Cell Warrior” to raise awareness and calls on government to train more specialists and expand access to genotype testing.
According to a Ministry of Health press release issued during World Sickle Cell Day commemorations on June 19, 2025, about 0.1 percent of Malawi’s population lives with sickle cell disease, while 9.1 percent carry the trait.
Globally, about 7.7 million people live with the disease and an estimated 300,000 children are born with the condition each year, with over 90 percent of cases occurring in Africa.
