Clearly children and young people may find valued support from their family, but given the hereditary nature of this illness we have observed that other relatives (e.g. aunts/uncles, cousins, siblings, grandparents) are often caring for their own family members, may be living with their own risk, or have become affected themselves. Thus, children and young people may benefit from support found outside their family e.g. from peers, teachers, youth workers or other professional agencies.

Professional support:

As well as getting support from the SHA Youth Service many of the children we work with are in contact with a local Young Carers Group, or statutory Health/Social Work services. Some teenagers are also in contact with their local Genetics Service. Alternatively Local Community Centres and Youth Groups may also be extremely helpful.

www.bebo.com/SHAyouth

www.youngcarers.net