…Create awareness on brittle bone disease
Concerned stakeholders in the health sector have advocated for a holistic health policy that speaks to inclusive care for children with disabilities in rural communities across Africa.
Similarly, the stakeholders also called for greater collaboration to deepen awareness on brittle bone disease, better known as Osteogenesis Imperfecta (OI) within the medical space.
Tarela Aghanti, founder/president, OIF Network (Nigeria & UK), in a research paper titled, ‘Breaking Barriers and Enhancing Inclusion Among Disabled Children’, stated that there is a need to foster an inclusive environment for disabled children in rural Africa.
According to her, the study, which was conducted alongside Bishop Davis Gatua from Kenya, is intended to contribute to global disability discourse offering scalable solutions for marginalised populations.
“By breaking these barriers, we aim to create dignified, sustainable, and impactful inclusion practices for future generations,” Aghanti stated at the recent inaugural international conference on Osteogenesis Imperfecta, held in Hemel Hempstead, UK.
According to Aghanti, the hybrid conference seeks to raise awareness about OI in underrepresented ethnic minority communities in the UK and Africa.
She disclosed that the OIF Network is a registered organisation supporting individuals with brittle bone disease in underserved communities across Africa.
According to her, the network will develop advocacy plans and joint action strategies for inclusivity, and strengthen commitment to OI/disability-inclusive initiatives in Africa.
Aghanti, who is also the deputy governor, National Youth Council of Nigeria (Europe Chapter) and the brand ambassador UN delegate, said the OI conference is also to call stakeholders, policymakers, non-governmental organisations, and community leaders to collaborate in mitigating barriers.
According to her, the network will continue to support OI sufferers in Africa, by raising funds for corrective surgeries, including a planned 2026 event in Nigeria.
Maryann Ibekwe, a professor from the department of Paediatrics, Ebonyi State University, said it is important to ensure a definitive diagnosis, which should include skin biopsy, gene investigation, and collagen pattern using a multidisciplinary approach.
“Management has to go together with orthopaedic surgery, physical/occupational therapy, nutrition, psychology, social services and audiology,” she said, stating that bisphosphonate treatment is the mainstay of treatment for osteogenesis imperfecta in Africa.
“Impact on health and quality of life for the individuals with OI remains a critical issue. Healthcare affordability is another key matter impacting treatment and quality of life for persons with OI in Africa,” Ibekwe stated.
