Lionheart Ability Leaders International Foundation (LALIF), a non-governmental organization focused on promoting the rights of persons with Deaf Blindness has called for collaborative partnerships with the relevant government agencies and health policy makers in the quest to create awareness about Usher Syndrome, which is the most common cause of combined vision and hearing loss in individuals worldwide.
The founding Executive Director of the organization, Mr. Solomon Okelola, made this call during the validation exercise of a medical research report led by LALIF and supported by Disability Rights Fund (DRF).
Mr Okelola called for the empowerment of medical practitioners to create more inclusiveness which will help spread and secure the health and wellbeing of generations yet unborn.
“The only way to ensure that the nation could empower medical practitioners on genetic testing and counselling for the identification, prevention and management of Usher Syndrome so as to curtail the spread and secure the health and wellbeing of generations yet unborn,” he said.
Okeola also noted that based on the research findings, medical professionals knew little or next to nothing about Usher Syndrome.
“With the findings from a just-concluded baseline survey conducted by Lionheart Ability Leaders International Foundation and Desire Health Inclusive Organization, with support from the Disability Rights Fund, it showed clearly that medical practitioners in Lagos State knew little or next to nothing about Usher Syndrome, the causes, common characteristics, or the devastating effects on the physical health, socio-emotional wellbeing and communication abilities of the affected individuals,: Okelola said.
He added that, “the findings further showed that medical practitioners had no knowledge of how to communicate with individuals who are Deaf and Deaf-blind, possibly as a result of Usher Syndrome.
Mr. Okelola stressed the fact that the lack of knowledge among medical practitioners, coupled with the unavailability of the equipment needed to enhance testing for Usher Syndrome poses a high possibility of the incidence of Usher Syndrome in the Nigerian society.
“We cannot categorically attribute any particular case of Deaf-blindness to Usher Syndrome in the absence of the technical know-how and equipment needed for testing, as there are other causes of Deaf-blindness aside Usher Syndrome. We might just notice that there is an increase in the prevalence of Deaf-blindness in the society due to so-called unknown causes, which might likely be Usher Syndrome,” he said.
While discussing the need to create awareness about the rare genetic condition, Mr. Okelola called for collaborative efforts with government officials and health policy makers to enlighten the people about the condition and the devastating complications, to empower medical practitioners with knowledge and skills on genetic testing and counselling for the identification, prevention and management of Usher Syndrome, and for the provision of well-trained disability support agents in public hospitals and primary healthcare centers to bridge the communication gap between the Deaf, the Deaf-blind and medical practitioners and ensure equal access to healthcare services for persons with disabilities side-by-side the general populace.”
Mrs. Adejoke Opeyemi-Ogungbire, Executive Director of Desire Health Inclusive Organization, also noted that the research shows that persons with disabilities, especially the Deaf and the Deaf-blind, lack access to primary healthcare and other medical services.”
She pointed out that they often experience discrimination, stigma and neglect the from medical practitioners, nurses, medical laboratory and security officials at healthcare centers
“A large number of the persons with Deaf-blindness and other disabilities interviewed said they would rather find other means to treat themselves than visit hospitals whenever they were not feeling too well and this is an infringement on their fundamental human rights,” She explained.
Mr. Mac-Humphrey Browne, a representative of the Lagos State Office for Disability Affairs (LASODA) commended the efforts of LALIF to ensure access to health, education and other social services for persons with Deaf-blindness and other disabilities in the state and the nation.
He said the research report would be submitted to the General Manager of the Lagos State Office for Disability Affairs for necessary action and more research to identify the prevailing causes of disabilities in various parts of Lagos State will be called for.
He noted that the results of the research would enhance factual information that would guide collaborative efforts to find sustainable solutions.