Usually when a young person has been diagnosed, the first point of contact with the Society will be through the parents or another adult. It is vital for us to remember that the person with RP needs a lot of help and support, as do all who surround him or her if the whole family is to work towards full acceptance of the disability. In describing the following emotions which parents experience after their child has been diagnosed, it should be realised that the intensity and pattern may vary with circumstances, whether or not there is already RP in the family and that the position the child holds in the family has relevance. For example it may be more difficult to put things into perspective if the affected child is the first of a family. And Guidance Many families in this situation, complain bitterly of the great lack of good sound information about the condition and its prognosis.
Ignorance is very frustrating.
They may know they need some kind of help but do not know where to find it. Not only does the disease itself have so many different forms but the help available in different parts of the country is as varied. If a child's sight deteriorates rapidly parents may have to face making very important practical decisions for the future, whilst still in a state of shock. Time is valuable to the young and time lost in schooling is hard to make up, especially with a disability. So if these parents have as much information as there is and informed support to help them, the future for the child is brighter.