What is Huntington's disease?

Huntington’s disease is caused by an inherited faulty gene that damages the brain over time. People with the disease can eventually lose the ability to walk, talk, eat, drink and care for themselves, requiring specialist support from those who understand the condition.


The disease is genetic, meaning it is passed down from one generation to the next. It therefore impacts entire families over generations rather than individuals alone.

Anyone with a parent who has Huntington’s has a 50% risk of inheriting the condition from them.


As Huntington’s progresses it can affect:


Movement: People can experience repetitive involuntary movements resulting in a decline in mobility, balance and coordination as well as difficulties with speech and swallowing.

Thinking processes: As the disease advances people can lose their ability to process information, make decisions, solve problems, plan, organise and care for themselves.

Mental health: People 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.


Generally speaking, symptoms begin to develop between the ages of 30 and 50 and can take between 10 and 25 years from starting until the end of life. However each case of Huntington’s is unique and can vary dramatically both in terms of age of onset, speed of advance and range of symptoms.


How many people in Scotland have Huntington's disease?

Around 800 people in Scotland are living with the symptoms of Huntington’s disease right now. A further 3,200 are estimated to be at risk of developing Huntington’s disease as a result of inheriting the faulty gene.


Juvenile onset Huntington's disease

In around 5-10% of cases Huntington’s symptoms develop before the age of 21. This is known as Juvenile onset Huntington’s disease (JoHD).


The search for a treatment

Although worldwide research is taking place there is, at present, no way to slow or stop the progression of Huntington’s.

However many of its symptoms can be managed with a combination of medication, alternative therapies and appropriate support from specialist services provided by Scottish Huntington’s Association (SHA) and its health, social care and third sector partners.