Below age 8: Your child is not likely to have a basic understanding of inheritance yet. However, if there is information your child wishes to know about ADPKD, you may want to give simple explanations from age 2 onwards. For example, if your child asks what a scar is or why you had to go to hospital, you could explain that you had poorly kidneys and the hospital helps make them better. This may help your child to feel encouraged to ask questions in the future.
8–11 years: Your child is likely to have a very basic understanding of inheritance. They may know that they share characteristics with their parents. They may talk about genes but not fully understand what they are. Often children of this age cope with simple explanations in response to their questions and are not easily upset. However, you may have to reassure them that having the ADPKD gene is not always the same as having the disease. Children and young people can easily confuse this, so it often needs repeating throughout development into adulthood.
12–14 years: Your child is beginning to develop more insight about inheritance. Young people will begin to recognise that you having the gene may have implications for them. They will usually cope well if you explain there is a 50% chance of them carrying a gene fault (mutation).
15–17 years: Your child is likely to recognise the risks to you, themselves and often their future children. They can begin to consider screening if they have not been diagnosed. By this age, young people will be learning about hereditary diseases in school.
Most children are quite pragmatic in response to learning about genetic risk in families affected by inherited genetic conditions, and the genetic condition itself. Children and young people are often focused on living their lives, developing friendships, schoolwork and their personal interests, so do not dwell on the disease or its risks.
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