The Early Years

Right now, you might be feeling overwhelmed, scared, and even confused. We understand, and we’re here to help. What you’ve probably already learned is that Usher syndrome is rare. It’s even likely that you had never heard of it until your doctor mentioned it in relation to your child’s hearing loss.

Usher syndrome impacts the body in three major ways: vision, hearing, and balance. There are three types of Usher syndrome: Types 1, 2, and 3; which senses are affected and to what degree depend on the type. The three types are differentiated by the severity of symptoms as well as age of symptom onset.

As a parent of a child with Usher syndrome, you may feel alone. Know that, through the Usher Syndrome Coalition, there is a community of parents who have "been there," survived and thrived. The resources on this page will help to familiarize you with the way Usher impacts your child and provide resources and tools to maximize your child’s potential. Initially, it may also be confusing trying to navigate the supportive connections you and your family may need over time.

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