Huntington's Disease Service
Huntington’s disease (HD) is a complex neurological condition with symptoms that typically begin to develop between the ages of 30 and 50. (In around 5-10% of cases HD symptoms develop before the age of 20 - this is known as Juvenile Huntington’s disease).
HD is hereditary, meaning it impacts upon entire families over generations rather than on individuals alone. Each child of a person with HD has a 50% chance of inheriting the condition.
As HD progresses it can affect a person’s:
Movement (or motor skills): People with HD can suffer from repetitive involuntary movements resulting in mobility, balance and coordination problems as well as difficulties with speech and swallowing.
Thinking processes (or cognition): People with HD can develop a type of early onset dementia, which affects their ability to process information, make decisions, solve problems, plan and organise.
Mental health: People with HD can also experience a decline in mental health. Depression, anxiety, irritability, obsessive pre-occupations and apathy are amongst the most common mental health problems experienced. Psychosis may also occur.
Symptoms generally progress slowly over a long period time. Those impacted by HD may eventually lose the ability to walk, talk, eat, drink, make decisions or care for themselves - requiring support for most or all of their activities on a 24 hour basis.
Fife HD Service
Fife has a Specialist HD Service spearheaded by an HD Clinical Lead and two HD Specialists, a Specialist Youth Advisor and a Financial Wellbeing Officer. Key contact details are as follows:
Dr Simon Rubidge
HD Clinical Lead
01592 643355 Ext. 22035
Jillian Foster (Senior HD Specialist)
Nicola Johns (HD Specialist)
Whyteman’s Brae Hospital
Specialist Youth Advisor
Senior Financial Wellbeing Officer
Consultant Clinical Psychologist
George Sharp Rehabilitation Unit
The Scottish Huntington’s Association has published a Government backed National Care Framework for HD which outlines the care and support that families impacted by the condition should be entitled to receive throughout the country. It can be viewed at care.hdscotland.org
Scottish Huntington’s Association is the only charity in the country exclusively dedicated to supporting families impacted by HD.
For further information please visit: hdscotland.org
Enrol HD Clinics are available every Tuesday and Friday please contact Nicola for further information details are above.
For more information contactNorma Henderson, Secretary
Tel: 01592 643355 Contact Norma Henderson online
By Post: NHS Fife, Victoria Hospital Hayfield Road Kirkcaldy Fife KY2 5AH