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The Lagos State Government has announced that every third Saturday in September of every year would be set aside as a day for persons with usher syndrome.
Usher syndrome is a genetic disorder that causes blindness and deafness. It is an inherited problem that includes hearing loss, vision loss, and balance problems. It's passed on from unaffected parents to their children. If both parents are carriers for a harmful change to the same gene, they have a 1 in 4 chance of having a child with Usher syndrome with each pregnancy.
This was contained in a statement issued to reaffirmed the stand of Lagos government.
The statement through the Office for Disability Affairs, said the announcement was pertinent to serve as a policy of inclusion of the state government towards ensuring that “no one is left behind,” especially persons with disabilities.
Speaking during a meeting with some persons with Usher Syndrome at the agency’s office in Ikeja, the General Manager of the Lagos State Office for Disability Affairs, Adenike Oyetunde-Lawal, said the rare genetic disorder which affects the three sensory organs of sight, hearing and balance currently has no cure, adding that it can be preventable.
He explained that the government had always been involving in relating to people with disabilities, stressing that the THEMES+ developmental agenda of Governor Babajide Sanwo-Olu was all-inclusive in this regard.
She said, “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 severe lack of genetic testing and counseling facilities.”
She added that "ignorance and inadequate technical know-how and necessary equipment had resulted in the rise of the condition in Africa and Asia. It has become important to ensure the prevention of the syndrome as it had adverse effects on the health, academic and general wellbeing of the affected individuals."
She said, “The Usher Syndrome community has advocated the third Saturday in September every year as an international day on which all nations and states can join efforts to create awareness about the condition with the aim of halting its advent and possibly making it history, thereby reducing the future incidence of deafblindness worldwide.
“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 2024, being Saturday, September 21, 2024.”
She added, “We wish to indicate our recognition of and full support for this annual observance going forward.”
Segun Okelola, Executive Director, Lion Heart Foundation, lauded LASODA and the state government for recognising people with Ushers Syndrome.
He affirmed that the move was a significant landmark in the fight against the onslaught of the deaf and blind conditions.
