If you have been recently diagnosed with Usher syndrome, be assured that it is perfectly normal to feel a wide range of emotions including devastation and grief. There are many of us who have been here, and we know what a difficult time this can be. Everyone handles their diagnosis differently, and it is ok to feel what it is you may be feeling. It is also ok to need to take some time to work through these feelings. However, If you feel your diagnosis is becoming too much to cope with, then we highly recommend talking with a registered therapist who can hep you to work through your feelings. Please reach out to your GP who will be able make some recommendations.
Many find, equipping themselves with knowledge and learning more about Usher syndrome helps them to feel more in control. Below, you will find many different sections providing information on certain topics including, more details about this condition, the genetics involved, Usher syndrome research, and more.
We also have a page dedicated to where you can find other adults in the USH community who are also on this journey, so you never have to feel you are going through this alone. You will find in time, the USH community is a wonderfully diverse and amazing community.
Learn about Usher syndrome
Discover USH genes, inheritance & genetic testing
Learn about different research and latest news
Find support for adults in the USH community
Information & leaflets you can download