By Aderogba George
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 problem, 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 spread of the syndrome.
Okelola said that presently, there is little knowledge of Usher Syndrome among medical practitioners in Nigeria, which made it difficult to prevent the spread of the condition.
He explained that “the syndrome doesn’t have any cure, and that affected individuals find it difficult to access education, health and other social services.
The executive director said that the affected individuals find it difficult to access education, health benefits in government health facilities.
“The affected individuals experience isolation, rejection, depression, anxiety, low self esteem, illiteracy, loss of independence because of ignorance from family members, teachers, doctors and others on how to provide for their needs.
“There is possibility of an increase in the prevalence of deaf blindness due to Usher Syndrome because of widespread ignorance and lack of equipment for genetic testing and counselling.”
He said that for the past four years, his foundation has been working with the support from disability right fund to enlighten the government, the disability communities and the general public about the present of individuals with deaf-blindness.
“This is why we are also joining hands with Global Usher Syndrome Coalition to prevent the spread, to safeguard the health of the generation yet unborn, ensure provision for health, academic and general welfare.
Mrs Ebenezer Balikis, parent of Ebenezer Oluwadamilola, a six-year carrier of the syndrome, said she noticed the condition in her daughter when she was growing up.
She added that her daughter could not hear nor see, but if supported with glasses, she usually sees very well.
Balikis explained that “some doctors have confirmed to us that the girl is deaf and blind, the sickness started when she was a baby.
“My girl has not been going to school, we are not happy about this, we are calling on government to make available the school for the blind and deaf in Ogun State where we live.”
Chief Ayuba-Burki Gufwan, the Executive Secretary, National Commission for Persons With Disabilities (NCPWD), told the people during the roadwalk that the commission will work with the NGO to advocate solutions to the people’s plight.
Gufwan was represented at the event by the commission Director of Social Integration, Mr Lawrence Idemudia.
“We will work toward providing care to people suffering from the syndrome,”Gufwan stressed.
NEWS AGENCY OF NIGERIA