Every person’s experience of Huntington's disease matters
By getting involved in research, you can help build understanding of the condition and shape what comes next. Our team is there to support you along the way.
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Result
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25+ years of research
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Clinically
Validated
What is Huntington’s Disease?
Huntington’s disease (HD) is an inherited neurological condition caused by a change in the huntingtin (HTT) gene. A person who carries the altered gene may develop symptoms at some point during their lifetime, although the age at which symptoms begin and the way they affect individuals can vary considerably.
HD affects people around the world. Scotland has one of the highest reported rates of Huntington’s disease, particularly in some areas of the Highlands and Islands. This has helped Scotland develop a strong network of specialist clinical services, research programmes and support organisations for people affected by HD.
Symptoms
Symptoms of HD most commonly begin in adulthood, often between the ages of 30 and 50, although they can occur earlier or later.
HD can affect movement, thinking, emotions and behaviour. Common symptoms may include:
- Involuntary movements (sometimes called chorea)
- Changes in balance or coordination
- Difficulties with concentration, planning or memory
- Changes in mood, including anxiety or depression
- Changes in behaviour or personality
Symptoms and their progression vary from person to person. Many people continue to lead active and fulfilling lives for many years after diagnosis.
How is Huntington’s Disease Diagnosed?
A diagnosis of HD is usually based on a combination of:
- Clinical assessment by a specialist
- Neurological examination
- Brain imaging, such as MRI scans, when appropriate
- Genetic testing
- Assessment of mood, thinking and wellbeing where required
Current Treatments
There are a range of treatments and supportive therapies available to help manage the symptoms of HD and maintain quality of life. Specialist multidisciplinary teams, including neurologists, psychiatrists, psychologists, nurses, therapists and support organisations, can help people and families navigate the challenges of living with HD.
While there is currently no treatment proven to slow or stop the progression of HD, research in this area is advancing rapidly. Scientists and clinicians around the world are working to develop new therapies that may change the course of the disease in the future.
Clinical trials play a vital role in this progress. By taking part in research, individuals and families affected by HD can help improve our understanding of the condition and contribute to the development of potential future treatments.
If you or a loved one has Huntington’s disease, complete our short pre-screener to see if you qualify