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Huntington’s: What you Need to Know

Huntington’s disease is a condition caused by a faulty gene in your DNA that causes progressive damage to the brain cells. Affecting up to 20,000 people in the UK, it equally affects men and women.

Usually, it develops between the ages of 30 and 50, although a person can start showing symptoms at any age. Initially, the symptoms characterised by jerky movements and mood changes are mild, but they get progressively more serious over time.


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What causes Huntington’s disease?

The faulty gene can be passed on from one parent to their child. There is a 50% chance the child of an affected parent will inherit the disease. This pattern is known medically as “autosomal dominant”. If one of your parents has Huntington’s, it is advisable to get yourself tested.

The faulty gene is in the DNA – the biological makeup that tells your cells what to do. This affects the nervous system, including the brain’s network of nerve tissues and those in the spinal cord that coordinate your body’s movements.


What are the symptoms of Huntington’s?

The disease has various symptoms at the different stages of its progression. You can have the faulty gene for years and not have any symptoms, but they will appear at some time in your life. Your movements can be affected; with twitching, jerky movements and uncontrollable fidgeting, known as chorea.

There may also be changes in your mood: irritability, aggression, anxiety and depression. Thinking patterns might change, with your memory and concentration adversely affected. This leads to changes in the way you communicate and interact with other people. You might also lose interest in things.

Due to muscle cramps in the legs and arms, and repeated twitching movements, people with Huntington’s are likely to experience sleeping disturbances, such as difficulties in falling and staying asleep and being awake for long periods. As a result, specialist beds are often required to prevent people from injuring themselves during the night.

As the disease progresses, it can make it harder for you to remember words and talk. Co-ordination and walking are likely to be affected, making you more likely to fall or trip up. You may find eating and swallowing difficult, which will ultimately lead to weight loss.

People with Huntington’s disease can find it hard to do even simple tasks and this affects their ability to work, enjoy social activities and maintain personal relationships.


Can you prevent Huntington’s?

As Huntington’s disease is a genetic disorder that runs in the family, it can’t be avoided or prevented. The aim of current treatments is to help relieve the symptoms, thus helping people with Huntington’s to function independently for as long as possible.


What age can you get Huntington’s?

The disease normally develops between the ages of 30 and 50, but it can begin at any age. If a person develops symptoms before they are 20, it is known as Juvenile Huntington’s disease – it is very rare to begin showing the symptoms at this young age. Only 10% of people with the condition begin with Juvenile Huntington’s.


Have doctors found a cure for Huntington’s?

There is no cure for the condition, although research continues. For example, the National Institute of Neurological Disorders and Strokes is using knowledge of the brain and nervous system to try to locate and isolate the gene that causes Huntington’s. The aim is to find out why and how the gene mutates.


How to live with someone with Huntington’s

Huntington’s disease is progressive, and the symptoms may not be too bad at first – it might be difficult to notice anything is wrong. However, usually over a period of 15 to 20 years, the systems get progressively worse. The person will then start to need help with everyday activities including personal hygiene; getting around your home; eating; and mental challenges, such as decision-making.

A trusted friend, family member or health professional who lives with a person with Huntington’s will eventually need to assume the role of carer. They will also need to monitor behavioural and physical changes.


Where can you get help for Huntington’s?

If you suspect you, or someone you know, has Huntington’s, the first place to seek help is your GP, who can organise the relevant tests to diagnose the disease. A selection of tools is used, starting with a physical examination.

The GP will also ask questions about your family’s medical history and other symptoms. They will carry out a CT or MRI scan to check for brain abnormalities. A blood test can also detect the Huntington’s disease gene.

Once a diagnosis has been made, your GP can prescribe medication and therapies, as required, while making regular checks on the condition’s progress.


What charities support people with Huntington’s?

The Huntington’s Disease Association is a UK-based charity that improves care and support services for people with Huntington’s. It also educates families and professionals, while championing people’s rights. In addition, you can find local Huntington’s disease support groups through social media sites.

The official statistics state between 10,000 and 20,000 people in the UK have Huntington’s disease, based on the number of people who have sought treatment and cases recorded at GP practices. However, a report in the British Medical Journal suggests the prevalence may be “substantially higher” than this.

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