How 11-year-old girl is battling genetic blood disorder

• According to the Ministry of Health, about 14,000 children are born with this condition each year.
• An estimated 50-90% of those born with the condition perish undiagnosed before reaching their fifth birthday in Sub-Saharan Africa.
• Marion hopes to overcome her health threats and push through life with conviction and determination.

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I don’t want to be known as the ‘sick girl’, I want people to see me for who I am, not just my illness – the eleven-year-old begins.

In the middle of Rachuonyo village, where a serene landscape borders the great Lake Victoria, a vibrant young girl, Marion, navigates life with resilience and courage, facing a relentless adversary: sickle cell anaemia.

This hereditary condition necessitated by irregularly shaped red blood cells, making it hard for full oxygen transfer to various parts of the body has proven to be a real challenge for her family.

Yellow palms, iris and pale skinned Marion has refused to let this condition define her journey, marked by both triumphs and tribulations. She battles the debilitating effects one day at a time.

Since childhood, she has withstood countless hospitalizations, painful episodes and long breaks away from school as she lets nothing break her spirit from feeling like any other normal child.

“My daughter’s journey with sickle cell began shortly after she was born. Like many infants with the disease, she experienced troubling episodes of discomfort and pain, often requiring hospitalization. As she grew older, I faced the daunting test of balancing her medical needs with her desire for a normal childhood,” Tabitha Adoyo, Marion’s mother, narrates her daughter’s struggles.

Despite the setbacks, Marion remains active and vibrant in her village, attending school, when not in pain, eager to learn and engage with her classmates.

However, her condition requires careful monitoring and frequent medical interventions, taking a pill of folic acid everyday to boost her blood flow.

“Marion’s health is our concern,” explains her sister Mercy. “We have to be proactive and vigilant in managing her condition.”

The family strongly believe in taking a holistic approach to Marion’s condition.

According to her mother, it is not just about treating the symptoms, it is about addressing the underlying factors that contribute to the illness with passion.

Education and stigma

“I have my good days and my bad days. But I refuse to let sickle cell define me. I am so much more than my illness,” Marion admits with a smile.

As Marion continues her brave journey with sickle cell, she serves as an inspiration to those who know her. Her resilience, courage and unwavering determination serve as a beacon of hope for others facing similar struggles.

Several learners who suffer from this condition face neglect as they seek to access adequate support and accommodation in schools.

Despite the prevalence of the disease in the country, many learning institutions lack resources and the necessary awareness tools to cater for the unique needs of these students.

Expert Opinion

Lea Kilenga, Founder and Executive Director, Africa Sickle Cell Organization (ASCO), says sickle cell students often experience stigma, discrimination and barriers to learning.

Without proper accommodation and understanding from peers and teachers, these students are at risk of falling behind academically and facing challenges in their educational journey.

According to her, sickle cell patients can manage the disease through a combination of medical interventions and life adjustments.

“The adjustments include staying hydrated, maintaining a healthy diet rich in fruits and vegetables, avoiding extreme temperatures, getting regular exercises, and adhering to prescribed medications,” says Ms Kilenga.

According to health experts, seeking regular medical checkups, staying informed about the condition, and seeking support from healthcare professionals and support groups are crucial for effective management.  

Sophie Uyoga, a Research Scientist at KEMRI Wellcome Trust Research Programme, insists victims of sickle cell always look up to the government to help them withstand the pain and address their conditions.

She adds that the relationship between malaria and sickle cell disease remains complex yet intertwined.

“Sickle cell trait, inherited from parents, provides some resistance to malaria, as the abnormal haemoglobin inhibits the malaria parasite’s growth within red blood cells,” says Ms Uyoga.  

The Sickle Cell Foundation of Kenya (SCFK) asserts that sickle cell disease increases vulnerability to severe malaria due to compromised immune function and reduced oxygen delivery.

The foundation believes malaria infections can trigger sickle cell crises in those with the disease, leading to complications. Despite this protective effect, malaria remains a significant threat, in the lake region, where sickle cell disease is also prevalent.

Just like Marion, sickle cell patients rely on the support of well-wishers to overcome the challenges, which continue to expose them to fatal health complications.

The Ministry of Health of Kenya estimates that approximately 14,000 children in Kenya are born with sickle cell disease each year.

Without routine newborn screening and access to proper treatment, an estimated 50-90% of those born with the condition perish undiagnosed before reaching their fifth birthday in Sub-Saharan Africa.

Children Sickle Cell Foundation (CSCF), a not-for-profit community-based organization, dedicated to improving the quality of life of persons with Sickle Cell Disease, says the Kenyan government can assist sickle cell patients by implementing several measures aimed at improving their quality of life.

“The government should prioritize funding for health care services tailored to sickle cell patients, ensuring access to affordable and specialized treatment, including medications, transfusions, and regular checkups,” says Kathleen Angangwe, a pioneer at Children Sickle Cell Foundation.   

Ms Angangwe explains that the government can invest in public education campaigns to raise awareness about sickle cell disease, its symptoms, and available resources for management and support.

The level of neglect by the government, according to her, is embarrassing. She adds that it was time government-supported research initiatives focused on finding better treatment options and potential cures for the disease.

Mrs Selina Olwanda, CEO of Children Sickle Cell Foundation (CSCF), while attending a public participation conference on Kenya Policy on Donation, Transfusion, and Transplant of Human Derived Medical Products, convened by the Ministry of Health State Department for Medical Services recently, pleaded with the government to implement policies that protect sickle cell patients from discrimination in education, employment and health care settings.

Government intervention

“The government can facilitate the establishment of support groups and community networks for sickle cell patients and their families to provide emotional support and share experiences. Through these comprehensive efforts, the government can significantly improve the lives of sickle cell patients across the country,” Mrs Olwanda added.

Sickle cell disease prevalence is high in Kenya, specifically along the lake region due to the inheritance of the sickle cell gene, particularly in regions where malaria is endemic.

The genetic mutation offers protection against malaria, leading to its persistence in populations historically exposed to the disease.

Health risks and complications

Thomas Williams, a worker at the KEMRI – Wellcome Trust Research Programme in Kenya, believes the protection against malaria comes with significant health risks, including organ damage, stroke and infections.

“Along the Lake Victoria region, malaria transmission is intense, exacerbating the impact of sickle cell disease. Many deaths occur due to a combination of factors, including limited access to health care, lack of awareness and complications arising from both sickle cell disease and malaria infections,” adds Williams.

Just like Marion, sickle cell patients endure a multitude of challenges, from chronic pain episodes to life-threatening complications. Fatigue, organ damage and susceptibility to infections are common.

Limited access to specialized healthcare and medications exacerbates their plight, leading to increased morbidity and high mortality rates.

Stigma and discrimination further compound their struggles, hindering employment opportunities and social inclusion. Despite advancements in health care, sickle cell patients require comprehensive support and advocacy to alleviate their burdens and improve their quality of life.

RELATED: Student battling Sickle Cell Anaemia beats odds, scores A in KCSE 

Hope for the future

As a matter of urgency, the government should formulate a comprehensive national policy specifically addressing sickle cell disease.

As the world waits for June 19 to celebrate International Sickle Cell Awareness Day, patients believe this year, their prayer for better care and healthcare support will materialize.

Until then, Marion hopes to overcome her health threats and push through life with conviction and determination.