Sickle Cell Disorder (SCD) is one of the most prevalent inherited blood conditions globally, characterized by severe anaemia, intense pain, and life-threatening complications such as childhood strokes, chronic leg ulcers, hip joint deterioration, organ failure, and social stigma. SCD causes immense emotional and mental distress, often leading to premature death. Approximately 100 million people worldwide live with SCD, and over 300,000 children are born with the disorder annually. More than 70% of these births occur in sub-Saharan Africa, with Nigeria having the highest numbers.
Despite the enormous challenges, the plight of individuals with SCD often goes unnoticed. Beyond the physical pain, these individuals struggle with relentless emotional trauma, medical expenses, missed opportunities, and frequent health crises. Their families and caregivers often bear a similar emotional toll, finding it difficult to cope during moments of crisis.
From this profoundly personal struggle, Timi Edwin, a sickle cell warrior, founded the CrimsonBow Sickle Cell Initiative (CrimsonBow), a faith-based non-governmental organisation committed to helping individuals manage the disease while leading meaningful lives.
Growing up with SCD, Edwin faced relentless bullying and stigma.
My classmates mocked me at every opportunity. It made me depressed—I grew up feeling like a waste of space. I wondered why God would create someone just to suffer like this. I cried and cried.- Timi Edwin.
But Edwin refused to let her condition define her. She channelled her pain into purpose, becoming a survivor and a leader. She is the CEO of Abilink Interiors, PR Head for the Coalition of Sickle Cell NGOs, Ambassador for the NCD Alliance, and Editor-in-Chief of “Our Views, Our Voices” Newsletter. Edwin exemplifies resilience with over 15 years of experience in HR, finance, business development, and administration.
According to the Sickle Cell Foundation Nigeria, the country bears the highest burden of SCD globally, ranking it among the top ten priority non-communicable diseases (NCDs) due to its significant contribution to illness and mortality. With a population of over 200 million, Nigeria records approximately 150,000 babies born with SCD each year. Tragically, between 50% and 90% of these children do not live to see their fifth birthday, primarily due to limited awareness, late diagnosis, and inadequate access to care.
CrimsonBow: A Lifeline for Sickle Cell Warriors
Founded on March 1, 2015, and officially incorporated on October 27, 2016, the CrimsonBow Sickle Cell Initiative serves individuals affected directly and indirectly by SCD, including parents, caregivers, and loved ones. The organisation operates in key Nigerian cities such as Lagos, Ibadan, Abuja, Abeokuta, and Minna. The initiative provides a range of support programs such as:
- Education and Awareness: CrimsonBow educates parents about genotype compatibility, encouraging couples to confirm their genotypes before marriage to reduce the incidence of SCD in future generations.
- Workshops and Counseling: The organization conducts workshops that equip families with the knowledge to manage the challenges of SCD. Counselling services offer much-needed emotional support to patients and caregivers alike.
- Medical Assistance: Crimson Bow partners with healthcare providers to offer better treatment options and reduce families’ financial burdens. Grants are also provided to help cover the cost of treatments and hospital admissions.
- Free Genotype Testing and Health Insurance: Since its inception, the initiative has conducted over 8,000 free genotype tests and provided clinical health insurance to more than 500 individuals.
- Community Empowerment: Through medication support groups and empowerment programs, CrimsonBow has supported over 800 patients and helped 500 warriors gain self-sufficiency.
Advocacy- Timi Edwin inspires hope and resilience
Living with SCD can be financially draining, with the high costs of treatment and frequent hospitalisations. CrimsonBow raises funds to provide financial relief to families in crisis to mitigate this. The organization also leads public awareness campaigns, reaching over 24,000 people through physical outreach efforts, helping to break the stigma surrounding SCD.
Timi Edwin’s journey shows the power of perseverance. While continuing to fight for her own life, she inspires others to see SCD not as a death sentence but as a challenge that can be overcome. Her work with the CrimsonBow Sickle Cell Initiative offers hope to thousands of individuals, showing them that it is possible to live meaningful lives despite the battles they face.
Through her advocacy and leadership, Edwin is changing the narrative around sickle cell disease, empowering warriors to thrive rather than just survive.
