Startling statistics reveal that a staggering 400,000 babies are born with sickle cell anemia worldwide each year. As we look towards 2050, research suggests a 30% increase in sickle cell cases globally, with a significant concentration in Africa. Perhaps more heart-wrenching is the fact that most children afflicted with sickle cell disease don’t make it to their 5th birthday.

Sickle cell, a genetic blood disorder, alters hemoglobin, contorting red blood cells into a sickle shape. Hemoglobin, responsible for oxygen transport and carbon dioxide removal, is essential for bodily functions. The repercussions of sickle cell anemia are severe, leading to crises of intense pain, life-threatening infections, and a range of complications including stroke, fatigue, and delayed growth.

I am Kadie Deen, a 51-year-old survivor, mother, and the founder of the Sickle Smart Foundation. Born in Sierra Leone during a time when awareness about sickle cell was scarce, I faced the daunting challenges of the disease from a very early age. Blindness, severe illness, and a grim prognosis marked my childhood, yet against all odds, I emerged victorious, guided by faith and purpose.

Living with a severe form of the disease (HBSS), I refuse to let my condition define or hinder me. Passionate about raising awareness and ensuring access to medical treatment, I founded the Sickle Smart Foundation in 2011. My monthly blood exchange transfusion treatments are documented and shared on my Sickle Smart Facebook page, providing a firsthand glimpse into my journey to maintain health.

One of our flagship initiatives is the “KNOW YOUR GENOTYPE CAMPAIGN.” In collaboration with Dr. Cheedy Jaja, a professor at the University of South Carolina, USA, we organized free screenings using the SickleScan test kit. This event took place at three locations in Freetown, screening individuals in the peninsular community, AYV television and radio broadcasting staff, and the Ola During Children’s Hospital.

Genetic screening at birth is pivotal, identifying carriers (sickle cell trait AS) and those with the disease (SS and SC). Sickle cell is a leading cause of infant mortality in Sierra Leone, emphasizing the urgency for early intervention and proper treatment.

While newborn screening programs are lacking in Sierra Leone, the pilot scheme with Dr. Jaja is making a significant impact. My goal is to inspire, encourage informed decisions, and prevent the birth of babies with sickle cell. The “Know Your Genotype” campaign empowers couples and young adults to make informed choices, with a strong belief in prevention.

Our sickle cell support groups on Facebook and WhatsApp have become pillars of strength, transforming lives and dismantling the stigma surrounding the disease. What was once considered a shameful condition is now met with confidence and acceptance.

Looking ahead, my long-term goal is to establish wellness clinics for sickle cell children in Freetown, Bo, and Kenema. Together, through advocacy, awareness, and support, we can make a lasting difference in the lives of those affected by sickle cell disease.

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