Lagos has become the first state in Nigeria to officially declare support for Usher Syndrome Awareness Day, marking the third Saturday of September each year as a day to raise awareness for the condition. Usher Syndrome is a genetic disorder that leads to progressive blindness and deafness.
The Lagos State Office for Disability Affairs (LASODA) made the announcement as part of the state’s ongoing inclusion policies, which aim to ensure that no individual, especially those with disabilities, is left behind.
During a meeting with people affected by Usher Syndrome at LASODA’s Ikeja office, General Manager Mrs. Adenike Oyetunde-Lawal described Usher Syndrome as a rare disorder that affects three critical sensory organs: sight, hearing, and balance. While the disorder has no known cure, she emphasized that preventive measures and early intervention can make a significant difference.
Oyetunde-Lawal stated, “Millions of people worldwide are affected by this condition, particularly in developing regions like Africa and Asia, where lack of genetic testing and awareness results in a higher incidence. Mass ignorance and inadequate technical know-how have allowed the condition to go unchecked, impacting the health, education, and overall well-being of affected individuals.”
She further explained that Lagos has always prioritized the inclusion of people with disabilities, as evidenced by the THEMES Plus developmental agenda of Governor Babajide Sanwo-Olu. The declaration of Usher Syndrome Awareness Day, starting on September 21, 2024, is part of this commitment.
The global Usher Syndrome community has long advocated for such a day to promote awareness, she said, adding, “Lagos proudly joins the worldwide effort to bring attention to this disorder. We hope our efforts will help reduce the future incidence of deaf-blindness.”
Oyetunde-Lawal also called on all Nigerians to educate themselves about the disorder and support initiatives aimed at safeguarding the health and inclusion of those affected.
Mr. Solomon Segun Okelola, Executive Director of the Lion Heart Foundation, praised the Lagos State Government and LASODA for their leadership, saying, “This is a historic moment for Nigeria. The state’s support will go a long way in bringing much-needed attention to Usher Syndrome, giving individuals the support they need to realize their full potential.”