Lionheart Ability Leaders International Foundation (LALIF) has called for collaboration at both Federal and State levels to raise awareness about Usher Syndrome and curb the spread of the condition to safeguard the health of future generations.
In an interview with Inclusive News Network during a recent baseline survey meeting organized by the foundation, Solomon Okelola, Executive Director of LALIF, emphasized that raising awareness about Usher Syndrome, particularly among individuals with Deaf-blindness, is crucial not only in Lagos State but across Nigeria. This effort is expected to foster collaborative initiatives aimed at preventing the condition’s spread and ensuring the health and well-being of future generations.
A recent baseline survey conducted by LALIF and Desire Health Inclusive Organization, with support from the Disability Rights Fund, revealed that many medical practitioners in Lagos State hospitals lack knowledge of Usher Syndrome. Alarmingly, many had never even heard of the condition prior to the survey.
Okelola stated, “This lack of awareness about the causes, symptoms, and implications of Usher Syndrome makes it difficult to prevent its spread. As of now, there is no known cure for the condition, which poses a risk to the health of future generations, potentially leading to hearing and vision impairments.”
He further explained, “Usher Syndrome affects three major senses—hearing, vision, and balance—leading to severe challenges that impact the health, education, and overall well-being of those affected. It can result in depression, ill health, suicidal tendencies, and a higher mortality rate. Coupled with widespread ignorance about the condition, this leads to a significant waste of human potential that could otherwise contribute to national growth and development, lowering the overall standard of living.”
He added, “Persons with disabilities, especially the Deaf, the Deaf-blind, and individuals with intellectual disabilities, lack access to primary healthcare and other medical services. One major reason for this is the communication gap between the Deaf and Deaf-blind on one hand and medical practitioners on the other.”
Recognizing the urgent need to raise awareness and safeguard future generations, the global Usher Syndrome community is working together to spread knowledge about the condition. They have advocated for the third Saturday in September each year to be observed as Global Usher Syndrome Awareness Day, encouraging nations and states worldwide to unite in their efforts to combat Usher Syndrome. The aim is to halt the condition’s spread and, ideally, eliminate it, thereby reducing future cases of Usher Syndrome and Deaf-blindness globally.
Okelola also highlighted that LALIF has been advocating for both the Lagos State and Federal Governments to recognize Global Usher Syndrome Awareness Day and support worldwide efforts to curb the condition’s spread.
He concluded, “Given the severe complications caused by Usher Syndrome and its impact on society as a whole, it’s no surprise that the Lagos State Government is prepared to join the global effort to raise awareness and work to halt the spread, for the benefit of generations yet unborn.”
Adejoke Opeyemi-Ogungbire
Adejoke Opeyemi-Ogungbire, Executive Director of Desire Health Inclusive Organization, echoed these concerns. She revealed that individuals with disabilities, particularly the Deaf and Deaf-blind, face significant barriers in accessing primary healthcare and other essential medical services.
She emphasized that these individuals frequently encounter discrimination, stigma, and neglect from healthcare staff, including doctors, nurses, laboratory technicians, and security personnel at medical facilities.
“A large number of those with Deaf-blindness and other disabilities interviewed expressed a preference for seeking alternative treatment methods over visiting hospitals when unwell. This situation represents a clear violation of their fundamental human rights,” she added.
Mr. Mac-Humphrey Browne, a representative of the Lagos State Office for Disability Affairs (LASODA), praised LALIF’s efforts to promote access to healthcare, education, and other social services for the Deaf-blind and individuals with other disabilities within Lagos State and across the nation.
He announced that the research report would be submitted to the General Manager of LASODA for necessary follow-up. Additionally, he called for further research to identify the root causes of disabilities in different parts of Lagos State.
According to Browne, the research findings will provide critical data to support collaborative efforts aimed at developing sustainable solutions.