APPENDIX 1
PREVALENCE OF HUNTINGTON'S DISEASE IN SCOTLAND
The prevalence of Huntington's Disease (the
number of affected people at any one time) has been documented
twice in the last 30 years in Scotland: by Bolt in 1970 when 5.2/1000,000
cases were documented in the West of Scotland, and in 1989 by
Simpson (in Grampian Region) when 9.94 cases/100,000 were documented.
It is accepted that the higher figure is more representative of
the Scottish population.
The prevalence statistics do not take into account
the morbidity associated with being at risk: above five times
the number of affected individuals (to take into account brothers
and sisters as well as offspring) will suffer the anxieties, even
psychiatric disease because of their problems. This can include
difficulties at school, lack of tertiary education and discrimination
at work. The group have a high rate of marital breakup, with the
consequent problems for children.
There have been studies (Simpson, 1992, Duncan
1997) which have demonstrated the lack of care, or co-ordinated
care given to this patient group. This has placed a significant
burden on the social services and has resulted in much expensive,
crisis led management.
Despite the needs of the families, there is
only one designated Huntington's Management Clinic in Scotland
at present (Grampian).
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