After Jack’s diagnosis, we decided to join the Nystagmus Network – a UK charity run by individuals and families affected by the eye condition. It provides information and support to children and adults, and promotes research into possible treatments. A few days after subscribing we received a copy of their quarterly magazine Focus and a Parents Information Pack. It was reassuring to learn;
– Although nystagmus is a symptom rather than a cause, in an overwhelming number of cases it is connected to only impaired vision rather than anything more serious.
– In the Nystagmus Network, a lot of members with the condition are the only ones in their family with it and no one really knows why it happened.
– Doctors will be able to advise the likely chances of other children in our family being born with the same condition.
– The world that Jack will see will not constantly wobble. His brain will learn to adjust to his eye movements to provide mostly stable images.
In addition the pack contains valuable information about others experiences, schooling, and support available. We highly recommend.
We have also signed up to receive the latest nystagmus related updates on Twitter from John Sanders who is the Development Manager for the Nystagmus Network.