Receiving the news that your child may have/has Usher syndrome can be upsetting, and can also bring a wide range of unsettling emotions including grief. It is important to take the time you need to work through these emotions as you digest the news.
It is also important to bear in mind that you are not alone.
Usher syndrome is an unpredictable condition, and no one can tell you when your child will begin to experience sight loss, or when sight loss will progress to affect daily life. However, your child won’t lose their vision overnight and change in sight is usually very slow. In fact, in most cases, many still have useable vision well into later life. Therefore, it is important to try and be positive, and take each day as it comes. Adapt to changes only when necessary, but not beforehand.
As you begin to digest the news, you may be interested to learn more about the condition. Learning as much as possible about the condition can help you to feel stronger, more in control, and ready for any challenges as they present themselves.
Another topic we also cover is how to tell your child about their diagnosis, which can be difficult, but we hope the tips we provide helps in some way. Linking and connecting with others in the USH community has proven valuable for many, therefore we have also produced a page with information on where parents can find connections in the USH community. We are also holding our first family/networking event this Autumn, and we hope to make this a yearly event. If you wish to be kept informed of these events, you can register your interest here.
We hope you will find these sections helpful, and as always, please reach out to us if you need any further information or support.
Usher syndrome explained
Discover USH genes, inheritance & genetic testing
Learn about different research and latest news
Telling your child about their Usher syndrome
Find out where to connect with other USH families
Information & leaflets you can download
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