In Kenya, Sickle Cell Patients are no Longer Just Surviving but Living

They grew up counting pain the way others count birthdays, each year marked not by candles on a cake but by fevers, fatigue, and endless nights in hospital corridors. Yet through every storm, they carried the name “warrior” with quiet defiance, refusing to let sickle cell disease write the final chapter of their story.

One of those warriors is Lincy Berita from Kisumu County, who has known pain as her oldest companion. At just three months old, the symptoms began, swelling in her hands and feet, anemia, and constant infections. School was no refuge. 

Teachers thought she was afraid of school because of her frequent absences, and classmates saw her as clumsy. But for her family, the truth was deeper: hospital visits had become the rhythm of her childhood.

“My childhood was filled with a lot of clinics and hospital checkups,” she recalls.

The doctors gave it a name, sickle cell anemia. For Lincy, the diagnosis explained the constant fatigue, the unpredictable fevers, the nights her joints burned like fire. But it also came with a heavy truth: there was no cure. Childhood became a cycle of missed school, mounting hospital bills, and whispered prayers at her bedside.

“While other children counted the days to Christmas, I was counting the days I could go without a crisis,” she says. “At first, I lived in denial. But with family support, I slowly accepted myself.”

Acceptance, however, didn’t shield her from stigma. At school, she struggled to make friends, and even teachers misunderstood her frequent absences. “Most of the challenges I faced were because people didn’t understand sickle cell,” she explains. “My mother was the only one who stood by me, she would even come to school and explain to teachers about my condition.”

Beyond the classroom, the community was equally unforgiving. Lincy recalls losing her first job because employers saw her frequent hospital visits as absenteeism. “Watching my age-mates accomplish so much while I was left behind broke me mentally and emotionally,” she admits.

Her lowest moments were compounded by stigma. At just seven years old, while on the way to hospital, a woman told her mother, “Why struggle with her? She will eventually die.” Such cruelty, Lincy says, left scars as deep as the disease itself.

Sadly, Lincy’s experience is far from unique. Nationally, the Ministry of Health estimates that 14,000 babies are born with Sickle Cell Disease in Kenya every year. For between 50% and 90% of these children, the disease poses a serious risk to survival before their fifth birthday due to lack of timely care.

14,000 babies are born with Sickle Cell Disease in Kenya each year and up to 90% die before age five due to lack of care.

Still, physical pain remained the greatest enemy. “If I had to put it in one word, sickle cell has crushed my confidence,” she confesses. “It makes you feel like you’re never enough, even when you are.”

In 2024, her crises became unbearable, sometimes weekly, leaving her in the ICU and dependent on the strongest painkillers. By January 2025, after her worst attack yet, her family desperately sought alternatives. That’s when they found Nairobi West Hospital, which offered an advanced procedure known as automated red blood cell exchange transfusion.

On 31st January 2025, Lincy underwent her first procedure. “It involves draining sickled blood cells and replacing them with fresh, healthy donor red blood cells,” she explains. The fear was overwhelming, and the first time was painful, but it gave her something she hadn’t felt in years, relief.

Since then, Lincy has gone eight months without a crisis. “I’ve gained weight, I can do daily activities, and I finally feel normal,” she says with a smile. Though the procedure brings side effects, nausea, fever, headaches, they are short-lived compared to the relentless pain of sickle cell.

Her only challenge now is the financial burden. “Each procedure requires seven to eight pints of blood every three months, and the cost of drugs, hospital visits, and treatment can be overwhelming. But I remain grateful. For the first time in my life, I feel like I am living, not just surviving.”

Lincy’s voice sharpens when she speaks about policy: “If the government can allocate money to cancer, why not sickle cell? Hospitals should treat crises with urgency, have emergency rooms for us, and make drugs accessible, even free, because sickle cell is expensive.”

Like Lincy, Mitchelle Omullo knows what it means to live with the daily uncertainty of sickle cell. But her journey took a historic turn in September 2025 when she became the first patient to undergo an automated red blood cell exchange in a public hospital in Kenya, a procedure previously accessible only in private facilities.

Mitchelle Omullo, filmmaker, chef, and sickle cell advocate. Photo Mitchelle 

For over 30 years, Mitchelle’s life was punctuated by crises that came without warning.

“The hardest part of living with sickle cell is the uncertainty. You never know when it's coming. Is it today? Is it tomorrow? The pain was relentless… even simple tasks weighed me down. I had to abandon plans over and over,” she recalls.

Stigma only made it worse. “I just had to be strong for myself and other warriors that look up to me. My slogan has always been: stigma nor discrimination do not define who I am. What people don’t see is the mental health toll, sickle cell is like fighting for your life every day.”

A minor stroke reminded her just how fragile life was. That became the push she needed.

“Since I had a minor stroke and had heard testimonials from other warriors, I decided to go for the automated red blood cell exchange. Stroke is one of the requirements for eligibility. At first, I feared the unknowns… especially when doctors explained and forgot to mention about inserting a catheter. But the thought of freedom from constant crises kept me steady.”

At Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) Victoria Annex, doctors connected her to an automated machine that removed her sickly red blood cells and replaced them with healthy ones. The process lasted about two and a half hours.

“Unlike bone marrow transplant which carries only a 50 percent success rate, involves chemotherapy and is financially draining, this exchange felt safer and less invasive. It makes you feel like a brand-new person.”

“The results were almost immediate. Two days after the procedure, I was up and about. Before, my legs always felt weak. But now, I feel energized, normal like any other person.”

Her mother, her caregiver and constant companion, has been her anchor. “My mum has been there for me throughout. She’s my strongest support system,” she says. 

Yet even with this support, Mitchelle knows access remains limited. “Not every sickle cell warrior is eligible. They consider frequent crises, fatigue and stroke. Many are still waiting.”

Among them is William Otunga, a 30-year-old clinical officer at JOOTRH who has faced five crises in the past year. For him, the machine symbolizes hope. Also waiting is Margret Ochieng from Manyatta, whose 16-year-old daughter Teresa has struggled with crises since the age of four.

“Sickle cell is not a death sentence. You can live, you can work, you can dream. With proper care we can live as long as anyone else,” Mitchelle insists.

But behind every warrior is often a silent fighter. For Mitchelle, that person has been her mother,  the woman who counted every coin to keep her daughter alive and carried the weight of questions she didn’t always have answers to.

Sitting beside her daughter, Janet Akinyi, a retired teacher, recalls the long journey, from discovering that only one of her children had the condition, to realizing too late that both parents were carriers.

“Mitchelle is my last child. As an infant she was the healthiest among her siblings. Up to age three, I never had an issue with her. Then her eyes started turning yellow. At Kenyatta National Hospital she was diagnosed with sickle cell. At first, we managed the mild crises with painkillers, but as she grew, the episodes became more frequent and painful. She faced stigma at school,  children avoided her, saying her yellow eyes made her weak,” Janet remembers.

Even so, Mitchelle pushed forward. “When she went to college, I was worried how she’d cope after a stroke. But she was determined. She studied Film and Theatre, later Catering and Hospitality, and went on to advocacy. Because of her efforts, Kisumu County turned Victoria Annex into a sickle cell hospital. That’s her impact.”

Janet admits the darkest moments were watching her daughter endure the pain of crises. “Sometimes she couldn’t walk or eat. Her hemoglobin once dropped to 3.2. As a mother, I wished I could take the pain away.”

When Mitchelle chose to undergo the new procedure in Kisumu, Janet was terrified. “She went alone at first, but I followed. Seeing the machines and blood in containers, I feared the worst. But she was so brave. She walked out, ate lunch, even took walks. Since then, no more fatigue, she’s been up and about.”

Her biggest wish is awareness. “The government, organizations, even the church should make genotype tests mandatory before marriage. Mitchell’s father and I were carriers, but we only learned after she was grown. If we’d known earlier, things might have been different.”

To other parents, Janet offers simple advice: “Support them emotionally and spiritually. Never give up. They can thrive just like any other child.”

As Mitchelle’s mother speaks, her voice carries both relief and a lingering ache. Relief that her daughter finally has a chance at normalcy and ache for many years of uncertainty and stigma they endured.

Her story underscores not just the struggles of one family but the gaps in awareness and healthcare that thousands of other sickle cell warriors face daily.

To understand why this new procedure is being hailed as a game changer, I turned to the doctors behind the milestone.

Globally, Sickle Cell Disease (SCD) is a colossal, silent public health crisis: approximately 300,000 babies are born with a major hemoglobin disorder each year, with over 75% of those births occurring in Sub-Saharan Africa. The reality of the disease in Kenya is part of this overwhelming burden.

The Clinical Perspective

Dr. Boniface Githaiga, Hematologist at Nairobi West Hospital.

At Nairobi West Hospital, Dr. Boniface Githaiga, a haematologist who has spent years treating blood disorders, says the reality of sickle cell disease in Kenya is far heavier than most people realize.

“It’s estimated that close to 400,000 people live with sickle cell disease in Kenya, with the highest prevalence in the western, Nyanza, and coastal regions. About 2 percent of the population there is affected, while 15–18 percent carry the trait.”

Western and Nyanza regions carry Kenya’s highest sickle cell burden, with 4.5% of newborns affected and up to 18% of people carrying the trait.

Sickle Cell Disease is most prevalent in Kenya’s Western and Nyanza regions.

For patients, the battle begins early. “Children develop painful swelling in their joints and fingers, then severe crises in the chest, back, and abdomen. Many suffer chronic anemia, frequent infections, and growth delays. Quality of life is heavily affected, they’re in and out of hospital, often miss school, and daily medication like hydroxyurea and folic acid is expensive. It’s not just a medical condition; it’s a social and economic burden too.”

Dr. Githaiga explains how the disease harms the body: “Sickle-shaped red blood cells block small blood vessels. That’s how crises, pain, jaundice, and even strokes happen.”

This dual reality explains why children in regions like Western Kenya face both high prevalence and high mortality. Without newborn screening, the odds are devastating: most children with sickle cell disease never live to see their fifth birthday.

Up to 90% of children with sickle cell disease die before age five.

When asked about the procedure Mitchelle and Lincy underwent, he clarifies: “We don’t remove the blood; we exchange it. Up to 70 percent of the sickle blood is replaced with normal blood. Once you do that, most symptoms improve.”

The method isn’t entirely new but has been limited to major hospitals in Nairobi and Mombasa due to cost and the need for reliable blood supply. “It’s not for every patient,” he explains. 

“It’s meant for those with repeated crises, frequent hospitalizations, or serious complications like stroke or acute chest pain. If you’re well controlled on medication, you won’t need it. But for patients like Mitchelle, it can change everything, improving quality of life, preventing strokes, and even prolonging life.”

Still, challenges remain. “It’s possible to roll this out in public hospitals, but the hurdles are cost and blood availability. If the government can subsidize it, and if we have enough donors, then more patients can benefit.”

Even one round of the procedure is not a cure. “Because red blood cells only live about 120 days, patients must repeat it every three months or so. It’s long-term management, but one that gives warriors a chance at fuller, less painful lives.”

Community Support and Advocacy

While doctors like Dr. Githaiga focus on the clinical side of treatment, community organizations are stepping in to ensure warriors and their families are not left behind. In Kakamega, one such lifeline is the Don Amolo Memorial Kids Ark (DAMKA), founded by Carolyne Mabunde in 2012.

Carolyne’s motivation was deeply personal. At the time, no facility in Kakamega County offered specialized care for sickle cell patients, and countless children died silently due to lack of follow-up and medication.

“With the introduction of hydroxyurea and structured management, we’ve seen a remarkable reduction in deaths,” she says. “Today DAMKA runs monthly psychosocial support groups and sickle cell clinics in Butere, Mumias, Kwisero and Matungu, reaching over 400 warriors. These clinics provide blood checks, malaria testing, and counselling services that keep patients stable and out of hospital.”

For Carolyne, the recent blood exchange procedure is more than a scientific breakthrough, it’s personal. She has watched Lincy, a young woman she often guides and encourages, undergo the procedure early this year after years of relentless crises.

“Her life has completely changed. She’s healthier, in school, even taking solo vacations, things she never thought possible,” Carolyne recalls.

But the reality is that access remains uneven. While the procedure is free for patients fully covered under the Social Health Authority (SHA), in private hospitals it costs between KSh 150,000 and 300,000, far beyond the reach of most families.

“At DAMKA, we step in where we can, often by paying SHA contributions for the most vulnerable members, ensuring they don’t miss out on medication and essential care,” Caroline says.

The organization’s work goes beyond treatment. DAMKA runs home visits, school advocacy, and income-generating projects like dairy farming and kitchen gardens to ease the financial strain on families.

“We’ve seen children expelled from school because teachers thought they were a burden. Through advocacy, many are now back in class and thriving,” she says.

Still, Carolyne believes lasting change requires policy action, not just charity. She is lobbying Kakamega County to pass a law mandating SHA coverage for all sickle cell patients in high-burden subcounties.

“Once their SHA is paid, warriors can live full lives without fear of medical bankruptcy,” she emphasizes.

Her message to society is clear: “Sickle cell warriors are like any other patients. They deserve love, dignity, and equal support. The burden is heavy, but if families and communities stand with them, they can reach their full potential.”

The solutions exist. Screening at birth. Access to comprehensive care. Community education to erase stigma. What remains is the will to scale them. Carolyne and others have shown what is possible, now the challenge is whether Kenya will act in time to give every child born with sickle cell a fair chance at life.