The Lionheart Ability Leaders International Foundation, in concerted efforts to contain the spread of Usher’s syndrome the major cause of Deaf-blindness, and the challenges accompanying the condition has paid an advocacy visit to the Ministry of Humanitarian Affairs, Disaster Management and Social Development.
During the visit on Friday, 29 October,2021, Executive Director of Lion-heart, Mr. Solomon O. Okelola, lauded the current administration’s efforts through the ministry which has been proactive in the fight against present global health challenges.
Okelola said: “as the nation struggles to find her feet and recover from the extreme impact of the global health pandemic amidst current economic and security difficulties, I am appealing, on behalf of Lion-heart for partnership with your office in to reduce the spread of USHER SYNDROME (a rare genetic disorder of which many medical practitioners in the nation are yet unaware). This syndrome remains the leading cause of combined deafness and blindness in the world”.
According to research, close to a million people are affected by this genetic disorder worldwide, with the greater percentage occurring in developing nations of Africa and Asia. The greater incidence in developing nations is a result of mass ignorance and a lack of genetic testing and counseling facilities in these regions.
Okelola noted that Usher syndrome currently has no known cure. The condition affects three major senses; Hearing, Vision and Balance.
Going further, he noted that the present level of ignorance about USHER SYNDROME among medical practitioners and the citizenry contribute to its spread while at same time posing another health crisis to contend with in the nearest future.
“Our Organization’s core goal is to Educate, Enlighten and Empower the world for change and transformation”. We therefore solicit partnership to:
1. Train health workers and equip them with the correct knowledge and skills necessary to halt the rise in incidences of deaf-blindness noticeable in recent baseline surveys supported by Disability Rights Fund. We also intend, to ensure that the health, academic and general well-being of victims of the condition (majority of whom are isolated) are adequately catered for.
2. .To train teachers and parents in the nation on knowledge and skills for communicating with and teaching individuals with Deaf-blindness.
3. Initiate a National Awareness Campaign through the National Orientation Agency (NOA) and National Commission for Persons With Disabilities, NCPWD”.
Mr. Shola Aderibigbe, a member and the Assistant Secretary of JONAPWD remarked that the Executive Director has well spoken. He appealed that issues of Usher Syndrome should not be swept under the carpet as many out there are suffering from the condition.
Aderibigbe says: “It has been noticed that affected persons 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 further requested that Sign Language interpreters should be employed for the Organization to enhance communication between them and deaf-blind/deaf persons. He also advocated for establishment of Special Schools for individuals with Deaf-blindness.
Special Adviser, National Social Investment Program, Dr. Nasir Mamudu, who spoke on behalf of the Hon. Minister, Sadiya Umar Farouq, appreciated the visiting delegates from LALIF. He remarked: “the Minister is aware of your coming and we are glad to receive you.”
Continuing he said “I am a doctor by profession. I studied epidemiology. The issue of Usher Syndrome is a very rare one.
“We have heard from you. The Minister and management will accede to all your requests.
“A report will be written and the Special Adviser on Special matters, Hon. Danjuma Attah will be involved. We will also make a recommendation to NCPWD for partnership as well.
“The Minister and management shall collaborate with you to curtail spread of the condition. The various ministries of education will also be engaged as we seek for inward review of the curriculum to provide for the educational needs of Usher Syndrome victims.”