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Usher Syndrome Awareness Day aims to draw attention to the most common genetic cause of combined deafness and blindness – deafblindness.

In 2015, the Usher Syndrome Coalition declared the third Saturday in September as “Usher Syndrome Awareness Day”. This day is close to the atumnal equinox in the northern hemisphere and marks the beginning of days when there is more darkness than light – a powerful metaphor for the threat of Usher Syndrome, because the progressive loss of cision caused by retinitis pigmenosa (RP) causes a gradual deterioration of the light-sensing cells in the retina, initially leading to night blindness, followed by a narrowing of the field of vision, commonly known as tunnel vision.

What is Usher syndrome? Usher syndrome (USH) is a rare inherited condition that is passed from parents to children and affects the three main sneses in the body: vision, hearing and balance. It is estimated that there are more than 400,000 people worldwide with USH. There are three clinical types of the syndrome: Type 1 usually results in deafness at birth, vestibular dysfunction (balance) and progressive loss of vision; Type 2 usually results in moderate to severe hearing loss at birth and progressive loss of vision; and in Type 3, symptoms usually becaome apparent in adulthood, with progressive hearing loss and progressive loss of vision.