Sickle Cell Warriors Demand Better Care, Hope, and Cure in Lagos March

At 63, Niniola Phillips-Adeleye, who has lived with sickle cell disorder for over six decades, stood among hundreds of advocates in Lagos, embodying resilience rather than defeat. She shared her journey, marked by countless pain crises and hospital admissions, emphasizing her refusal to let the condition define her life. "The journey has not been smooth. There have been endless pains, crises and hospital visits, but I have learned to remain positive and find ways to enjoy life despite the challenges," she said.

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I live with sickle cell disease and I will be 63 in August. The journey has not been smooth. There have been endless pains, crises and hospital visits, but I have learned to remain positive and find ways to enjoy life despite the challenges.

Phillips-Adeleye's testimony was a defining moment of the 'Red Umbrella Walk,' themed 'From Awareness to Action: Building a Nation of Care.' Organized by the Coalition of Sickle Cell NGOs to mark World Sickle Cell Day, the event united patients, caregivers, healthcare professionals, government representatives, and advocacy groups. Their collective demand focused on greater healthcare funding, improved treatment access, stronger support systems, and increased research investment for individuals living with sickle cell disorder in Nigeria.

Carrying placards with messages like "Stop the Stigmatisation Today!" and "Sickle Cell is Not a Death Sentence," participants stressed that awareness alone is insufficient. They called for enhanced healthcare access, increased research funding, and robust partnerships to improve patient outcomes. Timi Edwin, Chairperson of the Coalition, stated that the annual walk serves as a vital platform to bolster advocacy and push for better care. "We need a nation of care, we need all of us to come together, we need patient voices. We need the government, private individuals and corporate bodies to come together to ensure that people living with sickle cells are no longer stigmatised," she urged.

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We need a nation of care, we need all of us to come together, we need patient voices. We need the government, private individuals and corporate bodies to come together to ensure that people living with sickle cells are no longer stigmatised.

Edwin, who has lived with sickle cell anaemia for nearly four decades, noted that advancements in disease management and growing awareness have significantly extended patients' lives. "We are no longer dying young. We now have warriors in their 40s, 50s, 60s, 70s and beyond. Our bodies are slower to heal and we need to know why. That is why research is very important," she explained. Mudupe Sijuade, Southwest Regional Director of the Coalition of Sickle Cell NGOs of Nigeria, echoed this sentiment, highlighting how advocacy and proper medical care have transformed survival rates.

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We are no longer dying young. We now have warriors in their 40s, 50s, 60s, 70s and beyond. Our bodies are slower to heal and we need to know why. That is why research is very important.