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Huntington’s disease is a complex neurological condition with symptoms that typically begin to develop between the ages of 30 and 50. It is hereditary, meaning that it impacts upon entire families over generations rather than on individuals alone, with each child of a person who has Huntington’s disease at 50% risk of inheriting the condition. As Huntington’s disease progresses it can impact a person’s:  

  • Movement (or motor skills): People with Huntington’s disease 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 Huntington’s disease 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.

Around 1 in 5000 people in Scotland has Huntington’s disease - 1100 people have been diagnosed and an estimated 4000 – 6000 others, including young people, are at risk of inheriting it from their parents.

 

Symptoms generally progress slowly over a long period time. Those who have the disease may eventually lose the ability to walk, talk, eat, drink, make decisions or care for themselves. It typically takes between 10 and 25 years from a person developing HD symptoms until the end of life. 

 

Although worldwide research is taking place there is, at present, no cure for Huntington’s disease. However, many of its symptoms can be managed with a combination of medication, alternative therapies and appropriate support from specialist services delivered by Scottish Huntington’s Association (SHA) and medical, health, social care providers.