Not a death sentence: I have lived with sickle cell disease for 61 years

Miriam Oduor, 61, a sickle cell survivor, has lived with the disorder for decades. [Rodgers Otiso, Standard]

For decades, a deeply rooted belief has echoed across many Kenyan communities that children born with sickle cell disease rarely live beyond the age of 18. It is a narrative shaped by loss, reinforced by limited access to healthcare in earlier years, and sustained by misinformation that continues to linger even today. Yet in a quiet corner of Western Kenya, Miriam Oduor, now 61, stands as living proof that this assumption is far from absolute. 

Miriam has lived with sickle cell disease, navigating a condition that once threatened to end her life before it truly began. Today, she is not just surviving; she is speaking, advocating, and a living proof that sickle cell disease is not a death sentence.

“I remember it very well as if it were yesterday,” she begins. “My mother used to tell me that I was diagnosed with what she called a ‘monster’ sickle cell disease when I was just two years old.”

Miriam’s story began with signs that, at first, seemed ordinary but soon became alarming. Her hands began to swell painfully, and she cried frequently, often without relief.

According to the World Health Organisation (WHO), an estimated 14,000 children are born with sickle cell disease annually in Kenya. Globally, the number exceeds 300,000 each year.

In Sub-Saharan Africa, the situation is particularly difficult. Between 50 and 90 per cent of children born with the condition die before their fifth birthday, often without ever being diagnosed. This is largely due to limited access to routine screening, delayed diagnosis, and a lack of proper treatment.

Sickle cell disease affects nearly 100 million people worldwide, with over 70 per cent of cases occurring in Sub-Saharan Africa. The WHO estimates that about five per cent of the global population carries genes for haemoglobin disorders, including sickle cell disease and thalassemia.

Miriam Oduor, 61, shares a moment with another sickle cell survivor at Jaramogi Oginga Odinga Teaching and Referral Hospital. [Rodgers Otiso, Standard]

“My mother used to tell me that I cried a lot, again and again. My hands had swollen so much, and that is when they knew something was wrong,” Miriam recalls.

She was taken to the hospital, where doctors confirmed she had sickle cell disease. At that time, awareness about the condition was limited, and treatment options were far less advanced than they are today.

“I was introduced to medication immediately,” she says. “From that time, the hospital became part of my life.”

Miriam was the first child in her family to be diagnosed, but she would not be the last. Three of her siblings were also born with the condition.

“The hospital became my second home,” she says. “I was always there.”

Miriam’s early years were shaped not only by illness but by profound loss. Her father worked in an urban area while her mother stayed back in their rural home in Western Kenya. But tragedy struck when both parents died while she was still young.

Even more devastating was the loss of her siblings, who also had sickle cell disease. “I lost my parents, and I also lost my siblings who were suffering from the same condition,” she says.

Out of the four children who had the disease, only Miriam survived. “That is something I still carry with me every day,” she adds.

Their deaths reinforced a belief that was already widespread that sickle cell disease was a death sentence. For Miriam, survival felt uncertain, even unlikely.

After losing her parents, Miriam’s life became even more challenging. Without the constant care and support from her parents, managing her condition became harder. “It is during that time that the pain crises started hitting me badly,” she explains.

These episodes of intense pain caused by blocked blood flow came several times a year and often without warning. “They would come maybe three times a year, but when they came, they were very severe,” she says. “It is something that can even take your life.”

At times, she would faint due to extreme anaemia caused by low blood levels. “There were moments I thought I would not survive,” she admits. “I feared I would never reach 18 years.”

But she did. “God had other plans,” she says.

As Miriam grew older, the challenges of living with the disease extended beyond physical pain. Medical advice began to shape her personal life in ways that would leave a lasting emotional impact. “Doctors told me I should not even think about getting married or having children,” she says.

The reasoning was rooted in her fragile health. Pregnancy, they warned, would place immense strain on her body and could be life-threatening. “They said I would lose too much blood and that my body could not support a pregnancy,” she explains.

Faced with this reality, Miriam made a painful decision. “I have never married and I do not have children,” she says. “Not because I am barren but because I had to protect my life.”

It is a decision she still reflects on with mixed emotions. “I do regret sometimes,” she admits. “I wish I could have been in a position to have children. But I accepted it because I did not want something that would put my life at risk.”

In 1986, Miriam encountered another major complication. She developed a hip joint problem, a condition often linked to sickle cell disease due to restricted blood supply to the bones. “Orthopaedic surgeons told me it was caused by the condition,” she says.

Since then, walking has not been easy. “If you find me walking, you will notice I struggle,” she explains. “It is not easy to move.”

Doctors explored the possibility of surgical intervention, including artificial joint replacement, but ultimately advised against it. “They said it would not help much,” she says. “So I have continued to manage the condition through clinic visits.”

Despite these physical limitations, Miriam remains deeply grateful. “I thank God I am alive and still going,” she says.

Today, Miriam lives with her brother. While her daily life still involves managing her condition, she has found purpose in sharing her story. “I do advocacy wherever I find myself,” she says.

Recently, she attended a sickle cell disease conference organised by Zuwi Afya CBO in Kisumu, where she spoke as a survivor. “I went there to break the misconception that people with sickle cell cannot live beyond 18 years,” she says. “Look at me now, I am 61.”

Her condition, she explains, has become more stable over time. “My last crisis was last year,” she notes. “I follow what doctors tell me. I eat well, take medication, and attend clinics without fail.”

Her message is clear: Sickle cell disease is manageable. “As long as you take care of yourself, you can live proudly,” she says.

Kisumu County, located in the malaria-endemic Lake Victoria region, is one of the hardest-hit areas in Kenya.

Local health data shows that approximately 1,500 children are born with sickle cell disease annually, equivalent to three to four in every 100 births. Alarmingly, about 30 per cent of the population carries the sickle cell gene.

This high prevalence is partly linked to a genetic adaptation to malaria. Individuals with sickle cell trait are more resistant to severe malaria, which has allowed the gene to persist in these regions over generations.

However, for those who inherit two faulty genes, the consequences are severe. Medical experts explain that sickle cell disease is caused by a mutation in the gene responsible for producing haemoglobin, the protein in red blood cells that carries oxygen. In healthy people, red blood cells are round and flexible, allowing them to move easily through blood vessels. But in people with sickle cell disease, the cells become stiff, sticky, and crescent-shaped. “These sickle cells block blood vessels and break down easily,” explains Dr Gregory Ganda, Kisumu County Executive for Medical Services.

This leads to chronic anaemia, jaundice, recurrent infections, and painful crises. “When tissues are deprived of oxygen, patients experience intense pain,” he says.

Without systematic screening and intervention, the disease continues to impose immense physical, emotional, and financial burdens on families, particularly in low-resource settings like Kenya.

To manage the condition, doctors often use hydroxyurea to increase fetal haemoglobin, which helps reduce complications. Blood transfusions are also used, though they may be needed repeatedly.

According to Dr Dickens Lubanga, a paediatrician at Bungoma County Referral Hospital, sickle cell disease is inherited in an autosomal recessive pattern.

“This means a child must inherit two copies of the mutated gene, one from each parent, for the disease to develop,” he explains.

The financial burden often forces families to make difficult choices, sometimes delaying or skipping treatment altogether. Beyond medical challenges, social issues continue to affect those living with sickle cell disease.

Discrimination, misinformation, and stigma are widespread. Some individuals are viewed as burdens, while others face emotional abuse.

Women, in particular, may face blame when children are born with the condition, leading to strained relationships or even gender-based violence.

Organisations like Zuwi Afya CBO are working to address these challenges by raising awareness, supporting patients, and advocating for better healthcare policies.

Conferences and community forums are helping to bridge gaps between patients, caregivers, medical professionals, and policymakers.

For Miriam Oduor, these challenges are not just statistics; they are lived realities. Yet, at 61, she stands tall as a symbol of resilience and hope. “I want to live beyond 80 years,” she says with determination.