Usher Syndrome Awareness Day

09/21/2019

WHEREAS, Usher syndrome is a relatively rare genetic disorder caused by a mutation in any one of at least 10 genes resulting in a combination of hearing loss and visual impairment, and is a leading cause of combined deafness and blindness; and

WHEREAS, more than 400,000 people are affected by Usher syndrome worldwide; and

WHEREAS, Usher syndrome, which is presently incurable, impacts three major senses in the body: vision, hearing, and balance; and

WHEREAS, vision loss in Usher syndrome is caused by a progressive vision disorder known as retinitis pigmentosa (RP), which causes the light-sensing cells in the retina to gradually deteriorate, initially resulting in night blindness, followed by a narrowing of the visual field, commonly known as tunnel vision; and

WHEREAS, children with Usher syndrome are born with or develop hearing loss and it is estimated that upward of ten percent of people with congenital bilateral, sensorineural hearing loss have Usher syndrome; and

WHEREAS, balance is achieved and maintained through input from your eyes, and the vestibular organs in the inner ear and the sensory systems of the body, such as the skin, muscles and joints, thus, people with Usher syndrome suffer from severe balance issues due to vestibular dysfunction; and

WHEREAS, there are three types of Usher syndrome: Type 1, Type 2, and Type 3, which are distinguished by the severity and age when the signs and symptoms appear; and

WHEREAS, there are at least eleven different genetic types of Usher syndrome, as determined by the genes that are involved and one cannot determine the genetic type by clinical testing, as DNA testing is the only reliable way of determining the true genetic type; and

WHEREAS, because of limited public awareness, those affected with Usher syndrome may suffer from depression, anxiety, isolation, and loss of independence; and

WHEREAS, the Commonwealth of Virginia and the Usher syndrome community is uniting around the world is uniting to spread public awareness about this condition;

NOW, THEREFORE, I, Ralph S. Northam, do hereby recognize September 21, 2019, as USHER SYNDROME AWARENESS DAY in our COMMONWEALTH OF VIRGINIA, and I call this observance to the attention of all our citizens.