by Chris Agbo
Lionheart Ability Leaders International Foundation in conjunction with Usher Syndrome Coalition USA marked International Usher Syndrome Awareness Day 2019 with a rally themed Operation Save Africa’s Deaf-Blind Population: Lets give Individuals with Deaf-Blindness A Future. The awareness rally was carried out by members of this foundation on Thursday 12th December, 2019 in Abuja. The FCT Chapter of the foundation led by Titilayo Beyioku-Alase a renowned sign language interpreter with other members such as Aderayo, Hannah, Agbo Chris of The Qualitative Magazine among others walked from Unity fountain Abuja to Head of Service sharing fliers to motorists and pedestrians.
The essence of the awareness walk was to inform the public about usher syndrome which is relatively a rare genetic disorder caused by a mutation in any one of at least 10 genes resulting in a combination of hearing loss and visual loss and is the leading cause of combined deafness and blindness(deaf-blindness) in individuals worldwide. Most affected individuals end up with total blindness alongside varying degrees of hearing loss or total deafness.
Usher Syndrome affects a large number of people in Africa due to ignorance and lack of genetic testing and counselling facilities. The condition currently has no known cure and affects three major senses in a person’s body- hearing, vision and balance which can diversely affect health, academic, and general well being of the affected individuals as well as the development of various skills.
Individual who suffer this face with isolation, rejection, depression, anxiety, low self-esteem, illiteracy, loss of independence, ill health, suicidal tendencies, and a relatively high mortality rate because of the ignorance of their family, teachers, doctors, and the public. This make it difficult for them to contribute to the growth of the society.
However, persons with deaf-blindness can learn and be successful. Some of them includes Professor Helen Keller, Dr. B.R Smith, & Mr. Solomon among others.
In 2015, the Usher Syndrome Coalition declared every third Saturday in September as the global Usher Syndrome Awareness Day. This year’s edition was on 21st September, 2019 but due to lack of sponsors, LALIF FCT through self-sponsored put together awareness walk in December.
Learn all about Usher Syndrome/Deaf-Blindness and what can be done to help.
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