Sickle cell disease (SCD) affects more than 7.7 million people globally, with around 300,000 children born with the condition each year. Strikingly, nearly three-quarters of these children are born in Africa, where the disease remains most prevalent in malaria-endemic regions. In Kenya, approximately 14,000 children are affected annually, with the highest burden in the Lake and Coastal regions, alongside Nairobi.
SCD is an inherited disorder caused by a mutation in the gene responsible for hemoglobin production. This results in abnormally shaped red blood cells that are rigid and fragile, with a much shorter lifespan—20 to 40 days compared to the normal 120. The consequences are chronic anemia, blocked blood vessels, and reduced oxygen supply to tissues. These lead to complications such as severe pain episodes, acute chest syndrome, and stroke.
Medical progress has significantly improved outcomes for patients. Treatments such as folic acid, hydroxyurea, crizanlizumab, L-glutamine, prophylactic penicillin, and targeted vaccinations reduce complications. Advanced options like bone marrow transplantation and gene therapy now provide real hope of a cure. Yet, while survival rates have improved, the focus must shift beyond keeping children alive to ensuring they thrive, particularly during adolescence.
Adolescents with sickle cell disease face unique challenges as they transition into adulthood. Beyond managing pain and avoiding frequent hospital visits, they must also navigate mental health and reproductive health needs. For boys, much of the existing research focuses narrowly on complications such as priapism or the effects of treatment on fertility. What is often overlooked is the socio-cultural dimension of their reproductive health and how it shapes their overall well-being.
Empowering young people with SCD requires more than clinical care. It demands inclusive education, open conversations about reproductive health, and co-created strategies that resonate with their realities. Adolescents are not passive recipients of care; they are digital-savvy, bold, and clear about what works for them. Supporting them to take charge of their health will not only improve outcomes but also safeguard their future.
The journey ahead involves shifting from survival to thriving. By engaging adolescents meaningfully, addressing their mental and reproductive health, and equipping them with tools to live fulfilling lives, society can ensure that this generation of warriors grows into adulthood with confidence, dignity, and hope
