Overview

Huntington’s disease is an inherited neurodegenerative condition that stops parts of the brain working properly. It's inherited (passed on) from a person's parents. People usually notice symptoms in which typically presents in mid-adult life between the ages of 30 to 50. It gets gradually worse over time.

Symptoms can include:

• uncontrollable movements and fidgeting
• difficulty with speech and swallowing
• irritability, anxiety and depression
• problems with concentration and attention

A blood test can be used to identify Huntington’s disease in:

• adults with symptoms
• people without with no symptoms but who have a family history of Huntington's disease

There are currently no treatments to slow or prevent the onset of Huntington's disease. 

We offer diagnosis, treatment and therapies to manage your symptoms. We run a monthly multi-disciplinary clinic for people with symptoms.

Diagnosis and gene testing

Diagnosis might involve blood tests and a brain scan to make sure it isn't another condition. The Huntington's disease gene test can confirm the diagnosis.

We can do gene testing in different ways for families with a history of Huntington’s disease.

• Diagnostic tests help diagnose people with symptoms
• Pre-symptomatic tests can discover if someone at risk will develop the condition in their lifetime. This is only offered to ‘at-risk’ people over the age of 18 who’ve followed a predictive testing protocol. This involves genetic counselling sessions.
• Pre-natal tests can be used in pregnancy to see if the baby carries the change in the gene
• Pre-implantation genetic diagnosis can detect the gene change in the early embryo as part of IVF. Only unaffected embryos would be implanted.

Health information

• NHS website information about Huntington’s disease
• Huntington’s disease association provides help and support for people living with Huntington’s disease

Our consultants

Thomasin Andrews, consultant neurologist

Fred Kavalier, consultant primary care geneticist

Dene Robertson, consultant psychiatrist in behavioural disorders

Research and clinical trials

Research is vital to improving the care that you receive when you're unwell. You can help improve healthcare by taking part in research studies at our Trust.

Our service is part of the UK Huntington's disease network and the European Huntington's disease network. These networks aim to advance research, conduct clinical trials and improve care.

During your appointment, ask your healthcare professional about research. They'll be happy to tell you about research studies you could be eligible to join.

You may choose to take part in research projects if they're suitable. You can choose if you want to get involved. If you decide not to take part, it will not affect your treatment in any way.

Our current studies include:

• The registry study, an observational by the European Huntington’s disease network
• PREDICT-HD, a multi-site study involving Dr Thomasin Andrews