Have You Heard of Huntingtons Disease?

Huntington’s disease is a rare progressive brain disorder. It stops certain parts of the brain from working properly, and gets gradually worse over time.

It’s a genetic condition that is inherited from an individual’s parents. Huntington’s affects the body’s nervous system, and can cause changes with movement, learning, thinking, and emotions.

The most common symptoms include involuntary jerking, stumbling and clumsiness, and problems with your mood or concentration.

There is no cure for Huntington’s, but there are ways of managing the symptoms.

What is Huntington’s disease?

Huntington’s disease is an illness caused by a faulty gene. If your parent carries the Huntington’s gene, you have a 50% chance of inheriting it.

Symptoms usually start when a person is aged between 30 and 50, although they can begin at any time. Juvenile Huntington’s is the name given to the disease when someone develops symptoms before the age of 20.

It was named after the American physician George Huntington, who was the first medical professional to describe the condition.

Huntington’s disease occurs in men and women. Research indicates that 12 people per 100,000 people in the UK are affected by the condition. However, it is thought that there could be many more who have not been correctly diagnosed.

Symptoms of Huntington’s disease

The symptoms of Huntington’s disease vary between individuals, but the condition affects three main areas: movement, cognition (thinking), and behaviour (changes to someone’s behaviour and personality).

Some of the common movement symptoms include involuntary jerking or fidgety movements of the limbs and body; difficulty moving; problems swallowing, speaking, or breathing; and stumbling and clumsiness.

This is one of the terrible things about the disease, that it's so acutely embarrassing for the people who have it, because people often look like they're drunk. But in fact, of course, they're not - Charles Sabine

The physical symptoms of Huntington's disease sometimes cause others to mistake individuals with Huntington's for being drunk, particularly in the early stages of the disease.

The most common cognitive and behavioural symptoms are depression, stumbling and clumsiness, and mood swings and personality changes.

Diagnosis

If you think you may carry the faulty gene, there is a genetic test you can take. However, some people prefer not to know unless they begin to show symptoms.

Even once symptoms start to appear, getting a diagnosis can take time. Due to the nature of the symptoms of Huntington’s, it can be mistaken for other conditions such as Parkinson’s disease or Alzheimer’s disease.

If you are concerned that you may have Huntington’s due to your family history or because you are experiencing symptoms, it’s best to speak to your GP. They will be able to refer you to a specialist for tests to check for the condition.

The Huntington’s Disease Association also offers help and support for those with Huntington’s. You can contact them by visiting their website, or calling them on 0151 331 5444.

Treatment of Huntington’s

There is currently no cure for Huntington’s, and unfortunately the disease is usually fatal after a period of up to 20 years. However, there are steps you can take to improve your quality of life and make everyday tasks more manageable.

In the early stages of Huntington’s, exercise and physiotherapy can help boost your mood and concentration. Exercise can also improve your strength, balance, and coordination, all of which can be affected by the disease.

Emotional support is also important. Huntington’s is a rare condition, and as a result, living with it can be isolating. If you or someone close to you is living with Huntington’s, the Huntington’s Disease Association runs regular meet-ups where you can speak to other people with the condition and share your experiences.

You could also ask your GP to refer to for counselling, or contact the Huntington’s Disease Association to ask about speaking to a Specialist Huntington’s Disease Adviser (SHDA).

Talking about Huntington's disease

It can also be helpful to educate your friends and family about Huntington’s disease, in order to help then understand how best to support you.

If you aren’t sure how to begin the conversation, this interview by the National Public Radio with NBC television journalist Charles Sabine has some useful information about the condition.

Sabine has the gene for Huntington’s and has seen first-hand the impact of the condition. His brother also has Huntington's disease, and his father died from the illness.