By Barnabas Ahmed, TQM Abuja correspondent,
Lionheart Ability Leader’s International Foundation paid an advocacy visit to Federal Ministry of Humanitarian Affairs, disaster management and social development to introduce the challenges face people with blindness and urgency to curb the spread of Usher Syndrome.
The organization was received by Dr. Nasir Mamudu on behalf of the Hon. Minister.
The Executive Director of the organization Mr. Solomon O. Okelola, in his speech, expressed gratitude to the government and the ministry’s efforts to enhance the guest to see the nation safety through the present global health challenges, on behalf of Nigerians we are really grateful.
“Sir, as the nation struggles to find it’s feet again and recover from the extreme impact of the global health pandemic amidst the current economic and security difficulties, I hereby on behalf the organization appeal to your humble office to partnership in order to halt the spread of USHER SYNDROME; a rare genetic disorder of which many medical practitioners in the nation are yet unaware. This syndrome leading the causes of combined deafness and blindness in the world”.
He said, according to research; close to a million people are affected by this genetic disorder worldwide, with the larger incidence occurring in the developing nation of Africa and Asia as a result of mass ignorance and severe lack of genetic testing and counseling facilities, which means the condition is on a noticeable increase in the regions.
“Sir, the presentable condition currently has no known cure and affects three major senses; Hearing, Vision and Balance”.
Speaking further, he said that as the present level of ignorance about USHER SYNDROME among medical practitioners and the citizenry makes it liable to spread and present Nigeria with another crisis to contend with in the nearest future.
“Our organization core goal is “Educating, Enlightening and Empowering the word for change and transformation” so therefore we crave for your partnership to 1. Train health workers with the knowledge and skills necessary to halt the rise in the incidence of the condition, noticeable in recent baseline survey and to ensure the health, academic and general well-being of the affected one, majority of whom are isolated. 2. Enlightening Both Parents and teachers. 3. National awareness campaign through National Orientation Agency and NCPWD”.
Mr. Shola Aderibige who is a member and the assistant secretary of JONAPWD said the executive director have spoken well, he made an appeal that issues of syndrome should not be wept under carpets, many people out there are suffering from this decease called USHER SYNDROME, as the most affected people are deaf and the blind. It is notice that those affected are isolated by their parents, thereby disconnecting them from the world. With partnership we will be able to identify them and bring out the abilities in their disabilities.
He made a request that sign interpreter should be employed for the organization to enhance communication between them and deaf-blind/deaf persons and how to established special schools for those in such condition.
Responding the representative of the Hon. Minister. Dr Nasir Mamudu, Special Adviser, National Social Investment Program. Appreciate the delegate for coming. The Hon is aware of your coming and we are glad to receive your present.
“I am a doctor by profession, I study epidemiology, So issue of syndrome is a very rare condition. We have heard enough from you and the minister and management will stick to all your request, we are going to write a report, the Hon. Special Adviser on special Hon. Danjuma Attah will be involved as well. We will also make a report and recommendation to NCPWD to partnership as well. Definitely the minister and the management shall collaborate with you to curtail the spread of this virus”.
He added, ministries will collaborate, as this will called for inward review of curriculum as against USHER SYNDROME.
Those present at the meeting were:
Dr. Nasir Mamudu SAP- NSIP
Mr. Nnana Divine, Aids to SAP- NSIP
Mr. Solomon O. Okelola, Executive Director
Mrs. Aderibige Anuoluwapo, Sign Language interpreter
Miss. Aderayo Adefowora, Deputy Director and Precious care foundation in partnership.
Mr. Barnabas Ahmed, From TQM
