Every third week of September is set aside to carry out awareness campaign on Usher Syndrome/ Deaf-Blindness, Lionheart Ability Leaders International Foundation, LALIF, an NGO that have focuses on awareness campaign about usher syndrome/deaf-blindness on Wednesday organized another public awareness campaign on usher syndrome/deaf-blindness theme: Operation stop usher syndrome: Let’s give individuals with deaf-blindness in Nigeria a future!
The Executive Director of the group, Solomon Okelola during press time said that LALIF in solidarity with the Global Usher Syndrome Awareness Day had to put together a rally to create awareness on Usher Syndrome because of grave lack of knowledge of it.
Solomon expressed surprise about lack of knowledge of the Usher Syndrome among health practitioners when they organized a training for health practitioners on Usher Syndrome and this has resulted to lack of diagnosis and treatment of persons with the condition in Nigeria which is dangerous for Nigeria because if it is not checked and draw the necessary attention from government, a lot of Nigerians will in the nearest go down with deaf-blindness. In the last data collection about persons with disabilities, persons with deaf-blindness were not captured as one of the clusters of disability and no system have been fashioned for them to participate in elections.
Speaking further, he said that the public have little or no knowledge about Usher Syndrome/Deaf-Blindness and that have made a lot of persons with this condition to suffer so much in Nigeria, no provision is made for them to acquire education and also participate in other activities.
He painted a picture of how life is for a person with deaf-blindness, imagine a deaf person who find it difficult to communicate and suffer various kinds of marginalization and discrimination and also the same person doesn’t have sight. That is how it is for persons with deaf-blindness.
“Persons with deaf-blindness suffers much more than deaf persons and blind persons”, he added.
According to Okelola, the awareness campaign is to establish that persons with deaf-blindness are useful and they can contribute to the development of the country. He cited example with himself and how he was able to acquire education and now contribution to the development of the society. So, with more awareness about the condition, more persons with deaf-blindness become successfully.
He said that people often stigmatizing or isolate themselves from the persons with deaf-blindness because of the difficulties of communicating with them because many think that there is nowhere to communicate with persons with disabilities but they want inform people that there are several ways they can communicate with them and technology have also made it easier for persons with deaf-blindness to communicate.
It is in view of making life more meaningful for persons with deaf-blindness that the group awareness campaign also educated the government and society to know that following in addition:
- Usher Syndrome is capable of spreading and measures should be taken to prevent it.
- Usher Syndrome has no known cure and affects a person’s hearing, vision and balance
- Usher syndrome is the major cause of deaf-blindness.
- Usher is inherited genetic disorder caused by gene mutation.
He further suggested that more awareness should be carried out among health practitioners on Usher Syndrome to stop the spread of it in Nigeria, there should be effort to enhance the communication of persons with deaf-blindness and the society and government should make available learning materials/facilities that enhance the learning of persons with deaf-blindness in our schools.
He called on the public to join hands with the group to eradicate Usher Syndrome in Nigeria.