Lagos State Government has officially designated the third Saturday in September each year as a day to honor individuals with Usher Syndrome, a genetic disorder that leads to both blindness and deafness, aligning with global efforts.
The state’s Office for Disability Affairs announced that this declaration aligns with Lagos’ commitment to inclusive policies, ensuring that individuals with disabilities are not left behind.
During a meeting at the Agency’s office in Ikeja with persons affected by Usher Syndrome, Mrs. Adenike Oyetunde-Lawal, the General Manager of LASODA, highlighted that Usher Syndrome, a rare genetic disorder affecting sight, hearing, and balance, currently has no known cure but is preventable.
Oyetunde-Lawal emphasized the state government’s proactive stance on disability-related issues, noting that Governor Babajide Sanwo-Olu’s THEMES Plus developmental agenda is designed to be inclusive.
She remarked, “Millions of people are affected by this genetic disorder worldwide, with the larger incidence occurring in the developing nations of Africa and Asia as a result of mass ignorance and a severe lack of genetic testing and counselling facilities, mass ignorance, inadequate technical know-how and necessary equipment has resulted in a noticeable rise in the incidence of the condition in the regions of Africa and Asia.
Hence, the need becomes important to ensure prevention of the syndrome which has adverse effects on the health, academic and general wellbeing of the affected individuals.”
Oyetunde-Lawal further noted that the Usher Syndrome community has long advocated for the third Saturday in September to be recognized globally as a day for raising awareness about the condition.
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This international observance aims to halt the spread of the disorder and potentially eliminate it, thereby reducing future instances of deaf-blindness.
She continued, “As the General Manager of the Lagos State Office for Disability Affairs, for and on behalf of the Office, I hereby proclaim the Lagos State Office for Disability Affairs recognition of and full support for the Global Usher Syndrome Awareness Day as Saturday, 21st September 2024, and the worldwide efforts to heighten public awareness about the condition to reduce its incidence and possibly making it history. We wish to indicate our recognition of and full support for this annual observance going forward.”
She urged all Nigerians to educate themselves about Usher Syndrome and collaborate in safeguarding the health and well-being of future generations.
She also emphasized the importance of working towards the full inclusion of citizens affected by deaf-blindness in society.
Mr. Solomon Segun Okelola, Executive Director of the Lion Heart Foundation, praised LASODA and the Lagos State Government for being the first state to recognize Usher Syndrome.
He described the declaration as a significant milestone in the battle against the challenges faced by those who are deaf and blind.
Okelola added that with the state’s support and recognition through LASODA, awareness about the condition would increase, enabling those affected to fully realize their potential without any barriers.
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