Usher Syndrome Awareness Day

Usher Syndrome Awareness Day is dedicated to raising awareness about Usher syndrome. Celebrated every third Saturday in September, this day brings attention to a genetic disease that affects hearing and vision.

History

Usher syndrome is a hereditary condition occurring at the genetic level. For many years, it went undiagnosed, as doctors did not realize the symptoms shared a common cause. The disease was first described by ophthalmologist Charles Usher in 1914. Today, about 400,000 people worldwide are living with Usher syndrome.

The syndrome manifests if a person inherits two mutated genes—one from each parent. If only one gene is present, the person is a carrier but does not develop the disease. However, if both parents are carriers, their child can be born with Usher syndrome.

There are three recognized types of Usher syndrome. Type 1 is the most severe: children are born deaf and may have impaired coordination and balance. Types 2 and 3 generally do not show severe symptoms at birth, but hearing loss develops over time, potentially progressing to total deafness. A common feature of all types is retinitis pigmentosa, which can lead to progressive vision loss.

Timely diagnosis can greatly improve quality of life. Early intervention—such as the use of hearing aids or cochlear implants, and learning sign language and Braille—can help individuals adapt and develop skills for living with sensory loss.

How to Take Part

1. Support organizations dedicated to research and support for people with Usher syndrome.
2. Watch interviews with individuals living with Usher syndrome or read medical articles to learn more about this condition.
3. Raise awareness by sharing information about Usher syndrome on social media. Organize or participate in educational activities at schools or in your community.

When is Usher Syndrome Awareness Day in 2025?

Usher Syndrome Awareness Day is observed on the third Saturday of September each year.

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