Usher Syndrome

An interactive journey exploring deaf blindness

(scroll down)

Usher Syndrome is a rare genetic disorder that is the leading cause of deaf blindness.

Approximately 4 in every 100,000 babies are born with Usher.

Usher Syndrome has no cure.

Usher Syndrome has two primary conditions: hearing loss and vision loss caused by Retinitis Pigmentosa (RP).

We asked the Usher community to share their stories of what life is like living with Usher syndrome. They responded with stories that reflect many different aspects of life and remind us all that underneath everything, we are all human and we are all the same. Read their stories.