WHAT IS
USHER
SYNDROME?
Usher syndrome was first described by the founder of modern ophthalmology, Albrecht von Graefe, in 1858. Despite this, there’s little public awareness about the disease today. That’s because Usher syndrome is a rare genetic disease.
It’s incredibly important that we raise awareness, so that each person living with Usher syndrome is better understood and supported by the society they live and work in.
Want a short overview of Usher syndrome?
Whether you’re a member of the public, a healthcare professional, or an MP, there’s a leaflet for you. Think of it as your own bank of knowledge that you can tap into and share at any time.
Leaflet for the public
Leaflet for Healthcare
Leaflet for the MPs
Usher syndrome is the leading cause of genetically inherited, combined hearing and sight loss, It can also affect balance, It’s a different experience for everyone. For most people, hearing loss occurs from birth and their sight deteriorates as they get older. It is estimated that over 11,000 people in the UK live with Usher syndrome - over 400,000 people worldwide.
People with Usher syndrome are often diagnosed in childhood or early adolescence depending on the severity and type of the condition. There is currently no cure for Usher syndrome, but a genetic test can confirm the condition and people with Usher syndrome are then more able to decide on the best help to adapt their lifestyle.
We're encouraging GPs to carry out more genetic tests and, ultimately, help find a cure for Usher syndrome.
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GeneVision
A comprehensive resource aimed at patients, families and professionals on a range of genetic eye disorders, including Usher syndrome.
