Usher syndrome is a genetic condition. People with Usher syndrome are born deaf or hard of hearing and gradually lose both their hearing and vision over time. In some cases, balance problems may also occur. Eventually, they become both deaf and blind.
In the Netherlands, approximately 1,000 people are affected by Usher syndrome, and globally, the number is around 400,000. While there is currently no cure for Usher syndrome, there are promising and hopeful developments toward treatments that may halt the progression of hearing and vision loss.
TUNNEL VISION
A hallmark of the visual impairment in Usher syndrome is night blindness, which begins at an early age, and a progressively narrowing field of vision caused by Retinitis Pigmentosa. With Usher syndrome, it feels like you’re looking through an increasingly smaller tunnel (tunnel vision). More and more light-sensitive cells in the retina gradually die off. Eventually, the field of vision becomes so restricted that it’s as if you’re looking through a straw. Imagine what that must be like.
NO TREATMENT AVAILABLE YET
There is still no treatment available for Usher syndrome, but hopeful developments are on the horizon. Science faces significant challenges in finding solutions that could lead to a treatment for all 400,000 people worldwide who are deaf and blind due to Usher syndrome.
This is why Stichting Ushersyndroom funds projects and scientific research aimed at developing treatments and improving the quality of life for those affected. Our goal: *”By 2030, the Netherlands will recognize Usher syndrome, and diagnosis, care, and treatment will become standard.”*
WHEN YOU GRADUALLY BECOME DEAF AND BLIND
Usher syndrome is a severe condition that affects both hearing and vision. Living with Usher syndrome is life-changing and deeply impacts not only those affected but also their loved ones. Ultimately, people with Usher syndrome become both deaf and blind. To this day, there is no treatment to halt the progressive loss of hearing and vision.
Stichting Ushersyndroom funds scientific research to find an effective treatment. There is hope!
Join us in helping people with Usher syndrome continue to hear and see.
My greatest fear is losing my independence. It will be incredibly difficult for me to maintain a good quality of life if I am both deaf and blind.
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CONTACT
Stichting Ushersyndroom
Raapopseweg 128
6834 DV Arnhem
info@ushersyndroom.nl
KvK: 55 61 3004
RSIN 85 17 86 571
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