Telling your child
As a parent you will worry about how much to tell your child and when, this is quite normal and the answers will depend on your and your child’s individual circumstances and character – and not least on whether other family members are affected.
Your child may or may not be present when the diagnosis of RP is given to you. Indeed, you may wish to protect him or her from the diagnosis and delaying telling the child may seem the kind and easy way at the time. However if a child is not told the truth from the beginning it can be much harder for anyone to tell him or her later. In addition, he or she may find out elsewhere, or receive misinformation, and this could be disastrous. Your child may worry more than is necessary if they feel that there is a family secret about it; remember that children are sensitive to atmosphere and are bound, however young, to sense that something is wrong.
No child is too young to have questions simply and honestly answered. This can be extremely hard but most agree that it will help the whole family in the future; at any age knowledge is better than the lack of it. Any explanation given to your child must be given in a way that is appropriate for his or her age, but if you do not feel able to give the information yourself the doctors, nurses or family support staff in the eye clinic should always be willing to help.
Your child will naturally ask questions as he or she progresses through the different stages of RP. Your own knowledge and family history will influence your confidence in your ability to answer these and you will probably find that you are guided instinctively by your own child and their inquisitiveness. Most parents would advise that, generally, a principle of openness and honesty is best.
An essential thing to remember is to give yourself and your family time to absorb and adjust; time frames are different for everyone, and everyone has different coping strategies. An excellent resource to tell you more about dealing with diagnosis of RP for your child can be found on this page at the RP Fighting Blindness main website.
Use the basic information from the RP Fighting Blindness website and from the earlier stages of this pathway to explain what RP is and what it means. It is not normally necessary to explain RP in great medical detail to your child, though he or she will almost certainly develop a thirst for knowledge at some point.
It can be daunting judging who to tell or who needs to know. However as soon as vision is recognised as being impaired it is important to tell your child’s school and teachers, doctor, sporting clubs and so on, school trip organisers and insurers, and anyone involved in any activities your child will be taking part in outside of school and the home.
Bear in mind that it is possible that you may place your child and others at risk by not saying anything, even if you believe that by not telling others you are protecting your child.
If not already aware, your wider family will need to be told and will be a source of support in most cases for you and your child. You may also want their help to research any history of RP in your extended family. This might even involve genetic counselling to reassure other family members or to ensure they are properly informed if they are or might be affected.