ABOUT USHER SYNDROME

Usher syndrome (USH) is the leading genetic cause of combined and progressive deafness and blindness. Rebecca Alexander has USH Type 3A.

USHER SYNDROME FACTS

USH Q&A

  • Scientists have pinpointed three types of Usher syndrome: Types 1, 2, and 3. These classifications are based on the degree of hearing loss, the occurrence or lack of equilibrium issues, and the onset age of symptoms. Each type is further categorized into subtypes, defined by their genetic origins.

    ► Rebecca has USH 3A.

  • HEARING: normal at birth with progressive loss in childhood or early teens.

    VISION: varies in severity. Night vision problems begin in teens followed by a progressive loss of vision beginning in the peripheries.

    BALANCE: normal to near normal with a chance of later problems.

  • An estimated 400,000 people worldwide have Usher syndrome. 25,000 are estimated to be in the United States.

    ► Only 1% have been identified.

  • Presently, there is no treatment or cure for Usher syndrome. As a Board Member of the Usher Syndrome Society, Rebecca is intimately involved in critical work for treatments and a cure.

    ►Click here to learn about the research Rebecca supports.

Usher Syndrome Society portrait of Rebecca Alexander. She has a serious expression and is facing the camera. The left side of the image has a dark shadow.

WE ARE MAKING A DIFFERENCE TOGETHER

GET INVOLVED

MAKE A DONATION

Your donation allows us to connect people and create awareness around the world. Your generous, tax-deductible donation to Usher Syndrome Society will change the lives of 400,000 people with Usher syndrome and possibly over 1,000,0000 people worldwide with retinitis pigmentosa. Thank you for helping us directly fund research.

SPREAD THE WORD

There's no better way to make an impact than to become an active advocate yourself. The Usher Syndrome Society was born out of the recognition that a treatment for USH needed to be found quickly. Realizing that one of the most important ways to accelerate research is through educating the public about this orphan disease.