She was told she wouldn’t live past her 8th birthday. Now, her life’s mission is to fight for patients with this deadly disease

(CNN) — Three of the four siblings in Lea Kilenga’s family were born with sickle cell, including Lea. Her eldest sister passed away from the disease when she was just 4 years old. Kilenga herself was told that she would not live beyond her 8th birthday.

Sickle cell is an inherited and debilitating blood disorder that causes normal round red blood cells – which carry oxygen through 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 extreme pain.

“You’re frequently in pain. And they say by the time you’re 40 you have at least one organ that is extensively damaged,” said Kilenga, who grew up in Taveta, Kenya. “(The disease) is something that I would not wish for anyone.”

Of the 120 million people worldwide living with sickle cell, more than 66% are in Africa. Despite the prevalence, treatment to relieve pain and prevent complications is difficult to secure, and stigma against the disease is widespread, even associated with witchcraft in rural areas.

“Sickle cell affects more lower resource communities where there’s a large financial burden to access medicine and health care,” Kilenga said.

Kilenga has fought her whole life to overcome the challenges of living with the disease, and she is on a mission to help thousands of other sickle cell patients get the medical care they need to lead fulfilling lives. Through her nonprofit, Africa Sickle Cell Organization, she is breaking down stigmas and bringing treatment that was once only available in wealthy Western countries to sub-Saharan Africa.

Growing up with sickle cell

As a child, Kilenga was ostracized for having sickle cell. She first encountered the stigma around the disease in grade 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, educated themselves, and allowed us to grow and to thrive,” Kilenga said. “The challenges we faced in a home of people living with sickle cell was the merry-go-round of pain and hospitals and medicine. It was how we grew up.”

After graduating from university, Kilenga decided to travel the country taking photographs of people with sickle cell and interviewing them and their families about their struggles with it. Initially, she planned to photograph and interview 10,000 people. But after the horrors she encountered on the project, she stopped at 400.

She found sick children locked in rooms, crying incessantly for help yet ignored by family members who had no idea what to do. Kilenga said so many families had no understanding of how to care for their sick children and thought it would be better to let them die. The people she met throughout Kenya didn’t have access to any medical care or pain management. There were 4-year-old children who looked 1 year old because of poor growth development from a lack of treatment.

“When I went on the ground, the reality was worse than I could have imagined,” Kilenga said. “I could no longer do it because it was just so sad. I decided I had to share this pain with someone who could do something about it.”

Creating a new normal

Kilenga contacted the Director of Noncommunicable Diseases at Kenya’s Ministry of Health.

“I met with him. He was a lovely gentleman. He told me he was inspired by the photographs and the stories and we should plan a time where we can speak more about it,” Kilenga said.

She waited one month, two months, three months, and never heard back. She tried calling his office, emailing, and got no response. So, she began to email him a daily portrait and story of someone living with sickle cell from her project.

That got his attention. Finally, he responded, and together they worked to raise $20,000 to form a set of national guidelines in Kenya for the management and control of sickle cell disease.

Yet with health care in Kenya decentralized and delegated to the county governments, to really affect change for people with sickle cell, she was advised by the Ministry to start in one part of the country that had a budget to implement sickle cell care.

In 2017, Kilenga moved from Nairobi to a small village in the southern part of Taita-Taveta County. The area is plagued by a lack of access to clean water, food, health care, and education. There is also an alarmingly high prevalence of sickle cell in the region.

That year, Kilenga started Africa Sickle Cell Organization and has since helped 500,000 people. She provides access to treatment by offering health insurance, establishing specialized clinics, and educating medical professionals and communities about the disease.

Connecting patients with clinics

The organization onboards patients for health insurance based on need and their resources. Then they place them in care and link them with the closest sickle cell facility.

She and her group work in tandem with the government, outside organizations, and funders to sustain and create clinics that specialize in sickle cell maintenance and treatment. They identify providers who can plug in the gaps in care and financing to expand access for patients.

“We’re talking about inpatient and outpatient care, meaning when they are hospitalized everything is covered,” Kilenga said. “Clinics, labs, medicines, and anything else healthcare providers are giving are covered by the package.”

The organization currently supports four clinics in Kenya that serve 2,000 patients, Kilenga said. Patients usually come once a week or twice a month to see clinicians, get diagnostics, and monitor blood levels.

After six months in treatment, patients are enrolled in the organization’s program to support their livelihood, such as raising goats and chickens.

“What I’ve realized is you can give people medicines and access to care, and you can educate them all that you want,” Kilenga said. “But if they don’t have the basics like food, clean water, shelter, then you will not realize the outcomes that you want for them.”

Opening hearts and minds

Kilenga is also focused on creating community awareness to help end the stigma of sickle cell.

“In most communities, when your children have sickle cell, most blame the woman … and the woman is abandoned and left to (take) care of the children. And the community stigmatizes them to a point that they are so poor and destitute that they cannot ask for a job, or ask for help, because they have been shunned by their families,” Kilenga said.

Kilenga travels to villages and speaks with village elders, chiefs, parents, and community members to educate them about sickle cell.

“It’s an interactive session. I think this is one of the biggest tools that we use for elimination of stigma and education around sickle cell in communities,” Kilenga said.

“Those with sickle cell have been neglected, and I think this neglect has made them think that they don’t deserve good things. I need them to know that sickle cell is not just what 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 Africa Sickle Cell Organization website and see how to help.

To donate to Africa Sickle Cell Organization via GoFundMe, click here

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