Fighting CKD at 13 in Malawi: A call to action for better kidney care

Ken Ngwira, 13, from Malawi, underwent a profound transformation when kidney failure disrupted his once-healthy childhood in 2021. Enduring dialysis treatments for nearly 10 hours a week, Ken’s education was sacrificed, leaving him with monumental health challenges compounded by financial strain and limited resources. His story sheds light on the urgent need for systemic change in healthcare access, financial support, and treatment availability, not just for Ken but for countless other young patients battling kidney disease in Malawi and beyond.

The story of Ken Ngwira was written by Samuel Kumwanje, a kidney patient himself whose story has been published here.

Ken Ngwira is a 13-year-old boy residing in Lilongwe, Malawi. He moved from Mzuzu to access dialysis in Lilongwe, courageously battling kidney failure. His journey began in 2021, a year that marked a drastic shift from a healthy childhood to a life fraught with health challenges. The onset of symptoms – pain, vomiting, and facial and body swelling – had prompted his father to seek medical assistance. This quest led them through various hospitals, finally culminating in the diagnosis of kidney failure at Kamuzu Central Hospital. 

The diagnosis turned Ken’s life upside down. His days now revolve around a demanding routine of nearly 10 hours per week undergoing dialysis treatment at the hospital. The extensive time spent on treatment significantly disrupted his education, leading to the heartbreaking decision to discontinue schooling entirely. The toll on his health has been monumental, with daily struggles exacerbated by the complexities of managing the catheter placement. In fact, due to Ken’s veins being small, the operation to fix the arteriovenous (AV) fistula had failed [Editor’s note: An AV fistula is a connection that’s made between an artery and a vein for dialysis access].

Ken’s traumatic health odyssey happened behind the walls of Kamuzu Central Hospital, where he spent six hard months in the pediatric department. Initially reliant on oxygen concentrators to manage shortness of breath, he finally shifted to dialysis therapy, which has now become part of his life. Ken is facing several challenges that span beyond physical issues. These include lack of resources to afford supplementary drugs (such as calcium and calcitriol), transport to and from the dialysis unit, and recommended foods. Ken’s father, a watchman, struggles with a poor wage, making it extremely difficult to pay the necessities for treatment. Ken relies greatly on his father’s constant support throughout this difficult journey. However, financial stresses loom large, emphasizing the importance of comprehensive support to reduce the burden encountered by families navigating kidney disease.

The challenges faced by Ken and numerous young individuals battling the disease in Malawi underscore the imperative for systemic change. Advocating for strengthened healthcare forces and extended dialysis hours after school aims to address the plight of school-going patients. 

Moreover, bridging the gap in healthcare access between rural and urban communities is imperative. The exorbitant costs of essential medications and dietary provisions further necessitate affordable solutions to ensure equitable care for all. 

There is an urgent need for governments and other stakeholders to act. In Malawi, in fact, we only have two districts with dialysis facilities. We call for additional dialysis centers in other districts, implementation of Universal Health Coverage, and equity.

Kidney failure has no bounds, affecting people of all ages, socioeconomic statuses, genders, and locations. Ken’s battle represents the greater issues encountered by young patients in Malawi, pushing stakeholders to adopt structural improvements in healthcare access, financial support, and treatment availability to provide a brighter and more equal future for people suffering from non-communicable diseases.  

Disclaimer: The blog series is intended for informational purposes only and is not meant to endorse or promote any specific drug, product, or brand. Each individual’s experience is unique and should not be construed as medical advice or a guarantee of similar results for others. Always consult a qualified healthcare professional before making any decisions regarding your health and well-being.