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 3200 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.
About Scottish Huntington’s Association
1. People impacted by Huntington’s disease need specialist services to cope with a severe and complex disease, the impact on families and a lack of awareness amongst health and social care providers and the wider public.
2. Scottish Huntington’s Association is the only charity in the country exclusively dedicated to providing expert and personalised support for those impacted by Huntington’s disease.
3. Our personalised support reduces unnecessary hospital admissions, supports carers and other family members; lowers household poverty; and alleviates wellbeing risks to children and young people living in Huntington’s families.
4. We are commissioned by NHS Boards and Health and Social Care Partnerships throughout the country to share our expertise with front line staff and build support for improved services and higher standards of care for every family impacted by this devastating disease.
5. Scottish Huntington’s Association plays a full and active role in attracting the global research community to Scotland to work in partnership with us to improve the lives of families impacted by Huntington’s disease.
Fact Sheets - You, Your family and Huntington's disease
If you or a loved one has, or is at risk of, Huntington’s disease, you will have lots of questions about how it will impact your family and how you live your lives. From driving to life insurance, planning a family to choosing a care home, you can find what you need to know in our downloadable factsheets. Should you need further information please contact our HD Specialist, Youth Service or Financial Wellbeing teams using the links below. You can also email us at sha-admin@hdscotland.org or call 0141 848 0308.