Following a public awareness rally in Abuja, the “Operation Stop Usher Syndrome” advocacy group has called on the Nigerian government to recognize and support Global Usher Syndrome Awareness Day.
The rally, which began at Millennium Gardens and ended at the National Commission for Persons with Disabilities, aimed to raise awareness about Usher Syndrome a rare genetic disorder causing both deafness and blindness.
The group highlighted the need for Nigeria to join global efforts to prevent the spread of Usher Syndrome, which disproportionately affects developing nations due to a lack of genetic testing and counseling. They stressed that while carriers of the mutated gene do not display symptoms, their offspring may inherit the disorder, leading to combined deafness, blindness, and balance problems.
During the rally, advocates educated the public on the challenges faced by individuals with Deaf-blindness, urging the government to ensure proper healthcare, education, and other essential services for affected citizens.
At the National Commission for Persons with Disabilities, Mr. Lawrence Igemudia, Director of Social Integration, received the group on behalf of the Executive Secretary. He assured them that their concerns would be passed on and that the commission would work towards preventing the spread of Usher Syndrome and advocating for the inclusion of individuals with Deaf-blindness.
The group emphasized the need for genetic testing and counseling facilities in Nigeria, which are currently scarce, and called for the training of medical practitioners in detecting and managing Usher Syndrome. They urged the government to allocate resources to ensure access to testing and to prevent the condition from affecting future generations.
They also praised the Disability Rights Fund and other local agencies for their ongoing support, and called for continued collaboration with federal and state governments to improve awareness, medical care, and social inclusion for people with Deaf-blindness.
Global Usher Syndrome Awareness Day, held annually on the third Saturday in September, aims to unite nations in raising awareness about the condition. The group hopes Nigeria’s participation will help reduce the incidence of Usher Syndrome and improve the lives of those affected.
As the rally concluded, the group reaffirmed their commitment to working with the government and medical professionals to halt the spread of Usher Syndrome and to ensure full inclusion of individuals with Deaf-blindness in Nigerian society.
