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NGO advocates Global Usher Syndrome Awareness Day

Lionheart Ability Leaders International Foundation, an NGO, on Tuesday in Abuja, advocated 3rd Saturday of September every year for Global Usher Syndrome Awareness Day.
The Executive Director of the NGO, Mr. Solomon Okelola, made the call after a roadwalk organised with the collaboration of “The Usher Syndrome Coalition.”.
Okelola defined Usher syndrome as a rare genetic disorder caused by gene mutation, a defective combination that causes hearing loss and visual impairment.
He said, “Usher syndrome is the leading cause of combined deafness and blindness (deaf-blindness) in individuals worldwide.”
The executive director said affected individuals end up with total blindness alongside varying degrees of hearing loss or total deafness and balance problems, adding that currently, the problem has no cure.
He said that the aim of the roadwalk was to create awareness about the challenge and to empower government and the public about the condition, as well as what could be done to curb the spread of the syndrome.
Okelola said that presently, there is little knowledge of Usher syndrome among medical practitioners in Nigeria, which makes it difficult to prevent the spread of the condition.
He explained that “the syndrome doesn’t have any cure, and affected individuals find it difficult to access education, health, and other social services.
“The affected individuals experience isolation, rejection, depression, anxiety, low self-esteem, illiteracy, and loss of independence because of ignorance from family members, teachers, doctors, and others on how to provide for their needs.
“There is a possibility of an increase in the prevalence of deafblindness due to Usher syndrome because of widespread ignorance and a lack of equipment for genetic testing and counselling.”
Mrs. Ebenezer Balikis, parent of Ebenezer Oluwadamilola, a six-year carrier of the syndrome, said she noticed the condition in her child when he was growing up.
She added that her child could not hear nor see, but if supported with glasses, he usually sees very well.
Balikis explained that “some doctors have confirmed to us that the boy is deaf and blind; the sickness started when he was a baby.
“My boy has not been going to school; we are not happy about this; we are calling on the government to make the school available for the blind and deaf in Ogun State, where we live.”
Chief Ayuba-Burki Gufwan, the Executive Secretary, National Commission for People With Disability (PWD), told the people during the roadwalk that the commission will work with the NGO to advocate solutions to the people’s plight.
“We will work toward providing care to people suffering from the syndrome, Gufwan stressed. (NAN

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