If you would like to read more about growing up in families affected by HD see:
Forrest Keenan K, Miedzybrodzka Z, van Teijlingen E, McKee L,Simpson SA.
Young people's experiences of growing up in a family affected by
Huntington's disease. Clinical Genetics 2007: 71: 120-129.
Easton, J. Self-Understanding and identity: the experience of adolescents at
risk for Huntington's disease. Unpublished PhD thesis, University of British
Columbia, Canada, 2003.
If you would like to read more about family communication issues and HD see:
Grey literature
i) Hennig B (2003) Talking to Kids About Huntington's Disease.
ii) Talking to children about Huntington's disease, Fact Sheet 4 (available from HDA)
iii) Tyler, A. (1990) Helping the children to cope. Combat, 37, pp. 16-20
iv) Liebeck, T. How children cope with having a parent with Huntington's disease. HOPE: Newsletter of the HD Association of Ireland.
Academic papers
i) Skirton, H. (1998) Telling the children. In: Clarke A (ed) The Genetic
Testing of Children. Oxford: BIOS Scientific Publishers, pp. 103-111.
ii) Forrest K, Simpson SA, Wilson BJ et al. (2003) Barriers and facilitators
in family communication about genetic risk. Clinical Genetics, 64: 317-326.
iii) Forrest Keenan K, Simpson SA, Wilson BJ, van Teijlingen ER, McKee L,
Haites N, Matthews E. 'It's their blood not mine': Who's responsible for
(not) telling relatives about genetic risk? Health, Risk and Society 2005;
7(3): 209-226.
iv) Hold, K. What do we tell the children? Contrasting the disclosure choices
of two HD families regarding risk status and predictive genetic testing. J
Gen Counsel 2006, 15:4:253-265.
v) Cox S "It's not a secret but ..." Predictive testing and patterns of communication about genetic information in families at risk for Huntington's disease. Unpublished PhD Thesis, University of British Columbia, Canada, 1999
Further information and web resources
Huntington’s Disease Association: www.hda.org.uk/
International Huntington’s Association: www.huntington-assoc.com/
HD lighthouse: www.HDlighthouse.org
Huntington’s disease Advocacy Centre (for families by families): www.hdac.org/
For further education about HD see: www.stanford.edu/group/hopes/
