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. Like her two sisters, Kilenga was diagnosed with the genetic blood condition in early childhood. The disease changes the shape of red blood cells from round to crescent-shaped. These cells then stick together, causing blood clots, intense pain and anaemia. The condition mainly affects people of African or Caribbean heritage. Because Kilenga wasn’t the only one in her family dealing with “sleepless nights and night-long cries”, she thought “taking daily medicine, seeing the doctor every two weeks and undergoing routine blood transfusions were all normal for every child”. “Until the day a boy in my class, who was new, mentioned that I was peculiar and contagious,” says Kilenga, 33. “Despite efforts to make myself seem not so different, I couldn’t hide my jaundice and distended stomach and skinny body. Many of my classmates bought into the narrative, and soon no one wanted to associate with me, sit with me or touch me. I didn’t go to school for three months after this.” Her self-esteem bruised, she went through a period of “destructive behaviour” and was admitted to hospital multiple times with alcohol and drug overdoses. She managed to turn herself around in university. 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. “I was inspired by the stories and the people living with SCD – both patients and caregivers. It was a silent disease in that no one spoke about it for fear of stigma,” she says. Advertisement Half of the people Kilenga met had no access to pain medication, even though, as she says, “pain is universal and relative”. “Everyone has pain to varying degrees, but not everyone will understand your pain unless they experience it to the level you do.” The drug hydroxyurea, commonly used to prevent sickle-shaped blood cells from forming, was approved for treatment in Kenya in the past decade and is the most affordable option to manage the symptoms, although “it does not work for everyone and the term ‘affordable’ is a stretch”, says Kilenga. Only 5% of the people she photographed had seen a health professional, and most had received multiple misdiagnoses. 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. Manjusha Chatterjee, from NCD Alliance, called Kilenga a trailblazer. “Lea has championed the destigmatisation of her condition and NCDs more broadly to ensure more awareness of rarer NCDs and tackle the social taboos surrounding them.” Painful sickle cell episodes affected her more in her teens and 20s, but Kilenga can sometimes find herself in the emergency department when they strike, needing strong pain relief. Her vision is to make sickle cell disease a global health priority. “My message to people with sickle cell is there’s no saviour coming. We’ve had 100-plus years to wait for them, they have not shown up to make significant change for us. So we must make this change for ourselves and others like us.”