Fife has a Specialist Huntington’s Disease service for people with this condition.  The service is provided by a clinical lead and two other specialists in Huntington’s Disease supported by a specialist youth advisor and a financial wellbeing officer.

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.

The National Care Framework for Huntington’s Disease

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.