CNN
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Three of Léa Kilenga’s four siblings were born with sickle cell disease, including Léa. Her older sister died of the disease when she was just 4 years old. Kilenga herself was told she would not live past her 8th birthday.
Sickle cell disease is a disabling, inherited blood disorder that causes normal round red blood cells, which carry oxygen throughout the body, to become crescent-shaped and rigid. These misshapen cells can block blood flow to vital organs and lead to serious complications, including stroke, blood clots, anemia, and bouts of severe pain.
“We suffer a lot. And they say that by the time you’re 40, you have at least one organ that’s seriously damaged,” says Kilenga, who grew up in Taveta, Kenya. “(This disease) is something I wouldn’t wish on anyone.”
Of the 120 million people with sickle cell disease worldwide, more than 66% live in Africa. Despite this prevalence, treatment to relieve pain and prevent complications is difficult to obtain, and stigma against the disease is widespread, even associated with witchcraft in rural areas.
“Sickle cell disease is more prevalent in low-resource communities where access to medication and health care is a significant financial burden,” Kilenga said.
Kilenga has struggled her entire life to overcome the challenges of living with the disease, and she has made it her mission to help thousands of other sickle cell patients get the medical care they need to live fulfilling lives. Through her nonprofit, the Africa Sickle Cell Organization, she works to break down stigma and bring treatments to sub-Saharan Africa that were once only available in wealthy Western countries.
As a child, Kilenga was stigmatized for having sickle cell disease. She first encountered the stigma associated with the disease in primary school, when other children treated her differently, not wanting to sit next to her or touch her because they thought she was contagious.
“My parents protected us from stressors, they educated us and allowed us to grow and thrive,” Kilenga said. “The challenges we faced in a home with people with sickle cell disease were the merry-go-round of pain, hospitals and medications. That’s how we grew up.”
After graduating from college, Kilenga decided to travel the country photographing and interviewing people with sickle cell disease and their families about their struggles. She originally planned to photograph and interview 10,000 people. But after the horrors she encountered during the project, she stopped at 400.
She found sick children locked in rooms, screaming incessantly for help, but being ignored by family members who didn’t know what to do. Kilenga said many families didn’t know how to care for their sick children and thought it would be better to let them die. People she met across Kenya had no access to medical care or pain relief. Some 4-year-olds looked like they were 1 year old because of stunted growth from lack of treatment.
“When I got to the field, the reality was worse than I could have imagined,” Kilenga said. “I couldn’t go on because it was so sad. I decided I had to share this pain with someone who could do something about it.”
Kilenga contacted the director of non-communicable diseases at Kenya’s Ministry of Health.
“I met him. He was a lovely man. He told me he was inspired by the photos and stories and that we should set up a time to talk more,” Kilenga said.
She waited a month, two months, three months, and never heard back. She tried calling his office, emailing him, but got no response. So she started emailing him a daily portrait and a story of a person with sickle cell disease from her project.
This caught his attention. He eventually responded and together they worked to raise $20,000 to develop a set of national guidelines in Kenya for the management and control of sickle cell disease.
However, with health care in Kenya being decentralised and delegated to county governments, to really make a difference for people with sickle cell disease, the ministry advised him to start in a part of the country that had a budget to implement sickle cell care.
In 2017, Kilenga moved from Nairobi to a small village in southern Taita-Taveta County. The area suffers from a lack of access to clean water, food, healthcare and education. The prevalence of sickle cell disease is also alarming in the area.
That year, Kilenga founded the Africa Sickle Cell Organization and has since helped 500,000 people. It facilitates access to treatment by providing health insurance, establishing specialized clinics and educating health professionals and communities about the disease.
The organization enrolls patients in health insurance based on their needs and resources. It then places them in care centers and connects them with the nearest sickle cell treatment facility.
She and her group work in tandem with the government, outside organizations and donors to support and establish clinics that specialize in sickle cell treatment and maintenance. They identify providers who can fill gaps in care and funding to expand access to care for patients.
“We are talking about inpatient and outpatient care, which means that when they are hospitalized, everything is covered,” Kilenga said. “Clinics, labs, medicines and everything that health care providers give is covered under the package.”
The organization currently supports four clinics in Kenya that serve 2,000 patients, Kilenga said. Patients typically come once a week or twice a month to see doctors, get diagnoses and monitor their blood levels.
After six months of treatment, patients are enrolled in the organization’s program to support their livelihoods, such as raising goats and chickens.
“I realized that you can give people medicine and access to care, and educate them as much as you want,” Kilenga said. “But if they don’t have the basics like food, clean water, shelter, then you’re not going to get the results you want for them.”
Opening hearts and minds
Kilenga also works to raise awareness in the community to help end the stigma associated with sickle cell disease.
“In most communities, when children are affected by sickle cell disease, most blame the woman… and the woman is abandoned and left to take care of the children. And the community stigmatizes them to the point that they are so poor and destitute that they cannot seek employment or help because they have been rejected by their family,” Kilenga said.
Kilenga goes to villages and talks to village elders, chiefs, parents and community members to raise awareness about sickle cell disease.
“It’s an interactive session. I think it’s one of the most important tools we use to eliminate stigma and educate communities around sickle cell disease,” Kilenga said.
“People with sickle cell disease have been neglected and I think that neglect has led them to feel like they don’t deserve good things. I want them to know that sickle cell disease isn’t just who they are. It’s a fraction of a fraction of their life and they have so much more to do.”
Want to get involved? Check out the Website of the African Sickle Cell Disease Control Organization and see how to help.
To donate to the Africa Sickle Cell Organization via GoFundMe, Click here
