INFORMATION
Living with Huntington's Disease is the same in any country. The
Canadian pages have a very useful description of the complexity of living in a Huntington's
family and added to that is the varying support, information and services that are
available locally in New Zealand.
The most important need for newly diagnosed families is to be put in touch with the local
Huntington's Disease Association, which is the only source of
support and information, to find out about the services available.
Those "at risk" who wish to go through the Predictive
Test program must comply with the local protocol to ensure
that the needed information and support is available, which most agree enables families to be
positive and make the most of life at all times.
To find out how families were coping with receiving the results of predictive tests, the
Association in Wellington arranged for Alison Gray, interviewer and editor of "Genes &
Generations, Living With Huntington's Disease" to research
family responses to predictive testing among those who had been tested by the Central Regional
Genetics Service.
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