Adisease knownfor complex andsevere symptoms

In Scotland, around one in 5000 people has Huntington’s disease, 1100 people have been diagnosed with the condition, and a further 4000 to 6000 are at risk of having inherited it from their parents.

Symptoms are severe and complex. They include a loss of control over movement, leading to jerky movements and problems with mobility, balance and co-ordination, and loss of the ability to walk, talk, eat and drink.

The disease also impacts thinking processes, causing early onset dementia and impairing the ability to make decisions, solve problems, plan ahead and organise.

People with Huntington’s disease may also experience mental illness, such as depression, anxiety, mood swings, obsessive preoccupations and behaviour changes.

As the condition progresses, 24-hour care can be required, meaning people are no longer able to live at home with their loved ones.

To compound the dreadful toll on families still further, each child of a person with Huntington’s disease is at 50 per cent risk of having inherited the faulty gene, meaning they too will go on to develop the disease and its symptoms.

Symptoms of the complex neurological condition, which generally progress slowly over a long period of time, typically begin to develop between the ages of 30 and 50. It can take between 10 and 25 years from a person developing Huntington’s symptoms until the end of life.

Although worldwide research is taking place, there is no cure for Huntington’s disease.

Many of its symptoms can, however, 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 and social care providers.

SHA is the only charity in the country exclusively dedicated to supporting families impacted by HD through a network of specialists, youth advisors and a financial wellbeing service, providing a lifeline of expert and personalised support for the families it serves.

To find out more, visit hdscotland.org