For Lea Kilenga, life seemed normal until a new kid at her school encouraged the other kids not to sit next to her. The incident was her first realization that there was a stigma attached to living with sickle cell disease.
Like her two sisters, Kilenga was diagnosed with a genetic blood disorder in early childhood. The disease changes the shape of the red blood cells from round to crescent-shaped. These cells stick together, causing blood clots, severe pain and anemia. The disease mainly affects people of African or Caribbean origin.
Kilenga has since become a successful advocate for the disease in Kenya, where nearly 14,000 children are born with the disease each year. Photograph: Koyanga Bey/Courtesy of Lea Kilenga
Since Kilenga was not the only one in her family dealing with “sleepless nights and nightly crying,” she thought that “taking daily medicine, seeing the doctor every two weeks, and undergoing routine blood transfusions were normal for to all children.”
“Until a boy in my class, who was new, mentioned that it was peculiar and contagious,” says Kilenga, 33. “Despite efforts to make me look not so different, I could not hide my jaundice and distended stomach and thin body. Many of my peers accepted the narrative, and soon no one wanted to associate with me, sit with me, or touch me. After that, I didn’t go to school for three months.”
Her self-esteem battered, she went through a period of “destructive behavior” and was hospitalized several times with alcohol and drug overdoses. He managed to turn around the university.
Quick Guide
A common condition
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The human toll of noncommunicable diseases (NCDs) is huge and rising. These diseases kill approximately 41 million of the 56 million people who die each year, and three-quarters of them are in the developing world.
NCDs are simply that; unlike, say, a virus, you can’t catch them. Instead, they are caused by a combination of genetic, physiological, environmental, and behavioral factors. The main types are cancers, chronic respiratory diseases, diabetes and cardiovascular diseases – heart attacks and strokes. About 80% are preventable, and all are on the rise, spreading inexorably across the globe as aging populations and lifestyles driven by economic growth and urbanization make being unhealthy a global phenomenon.
NCDs, once considered diseases of the rich, now have control over the poor. Illness, disability and death are perfectly designed to create and widen inequality, and being poor makes you less likely to be accurately diagnosed or treated.
The investment in tackling these common, chronic conditions that kill 71% of us is incredibly low, while the cost to families, economies and communities is staggeringly high.
In low-income countries, non-communicable diseases (usually slow and debilitating diseases) are seeing investment or giving a fraction of the money needed. Attention remains focused on the threats of communicable diseases, but cancer death rates have long exceeded the number of deaths from malaria, tuberculosis and HIV/AIDS combined.
A common condition is a new Guardian series reporting on NCDs in the developing world: their prevalence, solutions, causes and consequences, telling the stories of people living with these diseases.
Tracy McVeigh, editor
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Kilenga has become a successful advocate for those living with the condition in Kenya, where nearly 14,000 children are born with the condition each year. In 2016, the Ministry of Health and NCD Alliance Kenya appointed MSC Champion of Kenya, her work started two years earlier with a photography project “to show that we were more”. He photographed 400 people.
“I was inspired by the stories and people living with SCD, both patients and carers. It was a silent disease because no one talked about it for fear of stigma,” she says.
Half of the people Kilenga met did not have access to pain medication, although, she says, “pain is universal and relative.”
“Everyone has pain to varying degrees, but not everyone will understand your pain unless they experience it on the level you do.”
From the 10003 Warrior project by Lea Kilenga. Photo: Courtesy of Lea Kilenga
The drug hydroxyurea, commonly used to prevent the formation of sickle-shaped blood cells, was approved for treatment in Kenya in the past decade and is the most affordable option for controlling symptoms, although that “doesn’t work for everyone and the term ‘affordable’ is a stretch,” Kilenga says.
Only 5% of the people he photographed had seen a health professional, and most had received multiple misdiagnoses.
Kilenga learned how “people with sickle cell disease, especially those in rural areas, largely self-medicate with herbs and traditional remedies due to lack of access to sickle cell care.”
Their findings contributed to the establishment of national guidelines for SCD care. Most children with the most severe form do not survive beyond the age of five. Kilenga’s sister died in infancy.
In 2017, Kilenga created the Africa Sickle Cell Organization to raise awareness and get better care for patients in resource-poor, high-burden areas, such as the coastal town of Taita-Taveta, where Kilenga lives.
From the 10003 Warrior project by Lea Kilenga. Photo: Courtesy of Lea Kilenga
NCD Alliance’s Manjusha Chatterjee said Kilenga was a trailblazer.
“Lea has advocated for the de-stigmatisation of her condition and NCDs more broadly to ensure greater awareness of rarer NCDs and tackle the social taboos surrounding them.”
Painful sickle cell episodes hit her hardest in her teens and 20s, but Kilenga can sometimes find herself in the emergency room when it strikes, needing strong pain relief.
His vision is to make sickle cell disease a global health priority. “My message to people with sickle cell disease is that no savior is coming. We’ve had over 100 years to wait for them, they haven’t come forward to make a meaningful change for us. So we have to make that change for ourselves and others like us.”
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