You are not alone. Many adult siblings juggle multiple responsibilities, feel isolated and need support in their sibling role. Use these pages to get information on sibling issues, and to make contact with other adult siblings in the UK.
Adult siblings are often concerned about the genetic implications of their brother or sister's condition. This may be something that has concerned you since you were a young teenager, or it may have become a concern recently if you are thinking about having children of your own. Due to siblings' increased knowledge about disability and health issues, it is possible that siblings think disability is more prevalant than it actually is. Some recent research with adult siblings of people with Down syndrome indicated that adult siblings may perceive they have a greater risk of having a disabled child than is actually the case.
It is important to get accurate information about your potential risk, and make informed decisions about having your own children. We have spoken to many adult siblings who have chosen through fear alone not to have children. If you have any concerns at all about your brother or sister's condition being genetic or know that you or your partner have someone in the family with a genetic condition, you can visit a genetic counsellor. This is a trained medical professional with knowledge of genetics. He or she will help you find out about any genetic basis for the condition, and help you deal with any related emotional or ethical issues. The decisions you make as a result are yours (and your partner's); you will not be 'told' what decisions to make, but given information and support to make decisions that are right for you.
See also Talking to your partner about having children
www.gig.org.uk/services.htm for a list of genetic centres in the UK
www.cafamily.org.uk/inherita.html for information on how conditions are inheritied and what pre-natal testing is available
www.youtube.com/user/downsyndromesibbook DVD explaining the genetics of Down's syndrome for siblings