For Lea Kilenga, life seemed normal until a new boy at her school encouraged other children not to sit next to her. The incident was her first realisation that there was a stigma to living with sickle cell disease. Kilenga has become a successful advocate for those living with the disease in Kenya, where nearly 14,000 children are born with the condition every year.
Named Kenya’s SCD champion by the ministry of health and NCD Alliance Kenya in 2016, her work began two years before with a photography project “to prove there were more of us”.
She photographed 400 people. Only 5% of the people she photographed had seen a health professional, and most had received multiple misdiagnoses. Healthy blood cells are seen along with diseased cells.
About 300,000 babies are born with the disease each year. Kilenga learned how “people with sickle cell, especially those in rural areas, largely self-medicated with herbs and traditional remedies due to lack of access to sickle cell care”. Her discoveries contributed to the establishment of national SCD care guidelines.
Most children with the severest form do not survive beyond the age of five. Kilenga’s sister died in childhood. In 2017, Kilenga set up the Africa Sickle Cell Organisation to raise awareness and get better care for patients in resource poor, high burden areas, such as the coastal city of Taita-Taveta, where Kilenga lives.