By Esther Onyegbula

An advocacy organization, These Genes Foundation, has been working to support the implementation of global best practices in the care of people living with sickle cell disease (SCD) in Nigeria and to address unmet needs related to this condition.

This commitment was emphasized during a sensitisation and fundraiser event organised by the foundation for individuals affected by sickle cell disease.

The foundation’s efforts focus on minimizing the burden experienced by those living with sickle cell, urging the government, especially the Federal Government, to recognise it as a public health issue.

The initiator of the foundation, the late Tosyn Bucknor, left a legacy for those she referred to as “Sickle Cell Champions.” Her work continues through These Genes Foundation, led by her sister, Mrs. Funke Bucknor-Obruthe, a renowned event expert and founder of Zapphaire Events.

“The initiative recognizes individuals with sickle cell as champions rather than warriors,” said Mrs. Bucknor-Obruthe, describing her late sister as “vibrant and passionate, someone who courageously battled sickle cell disease and dedicated her life to empowering others affected by the condition.”

Mrs. Bucknor-Obruthe explained that the foundation, which was relaunched provides financial relief to indigent parents of children with sickle cell, as well as essential medications for those hospitalized due to complications.

Additionally, the foundation offers support for educational expenses, counseling, and awareness about the disease, equipping individuals with knowledge to manage the condition effectively,” she said and highlighted key focus areas, including medical, educational, and financial support, aimed at improving the quality of life for people living with sickle cell disease.

One of the facilitators, Caleb Audu, emphasized the need for sensitisation efforts to combat SCD in Nigeria, noting:“We need collaborative and significant efforts to create awareness,” adding that young advocates are being trained to educate the public about this inherited disorder.

Audu advocated for grassroots initiatives to extend the foundation’s impact, suggesting that corps members could be trained during orientation camps to educate and empower local communities.

He also called for the government to treat sickle cell as a public health issue, adding:“Nigeria has the highest cases of sickle cell disease in the world. It is essential for the government to tackle it as a public health issue, which will enable more opportunities and funding for carriers of the disease.”

Audu stressed the need for effective legislation to ensure equal opportunities for individuals with sickle cell, particularly in employment, political appointments, and career development. “Legislation can help prevent discrimination against sickle cell carriers, allowing them to reach their full potential,” he noted.

He further highlighted the financial burden faced by parents and guardians of sickle cell patients due to limited government support. “The financial burden on families is enormous. Patients require daily treatment, and government assistance is crucial,” Audu explained.

He also proposed easing the financial burden for students with sickle cell, especially in professional programs like law school, as part of a broader effort to support Sickle Cell Champions.

A Sickle Cell Champion, Serah Makka, shared her personal journey, stating how openly discussing her diagnosis has helped her heal emotionally.

“Living with sickle cell in Nigeria often entails hiding one’s condition because of societal stigma. However, I’ve chosen to defy this norm and speak openly about my challenges,” she said.