It's genetic
Huntington’s disease is not something you can catch; it is inherited. Every child conceived naturally to a parent who carries the Huntington’s gene has a 50% chance of inheriting it.
Huntington’s disease is an illness caused by a faulty gene in the person's DNA.
Huntington’s disease affects the body’s nervous system – the network of nerve tissues in the brain and spinal cord that co-ordinate the body's activities. Although there is, as yet, no cure, getting the right care and support to manage symptoms more effectively can improve quality of life.
Huntington's disease symptoms
The symptoms of Huntington’s disease vary widely between people. Even people in the same family may be affected differently. However, changes usually affect three main areas:
- Movement / chorea
- Cognition
- Behaviour
Some facts about Huntington's
About the gene and symptoms
You can live with the faulty gene for years without symptoms, but if you do have it, at some stage you will develop symptoms. Doctors cannot tell you when this will be but it usually develops between the ages of 30 and 50.
It affects men and women
Huntington’s affects men and women. If you develop symptoms before the age of 20, this is known as Juvenile Huntington’s disease.
The stages of Huntington's disease
Below are just a few of the possible symptoms - some people experience them and others may experience different ones. There are many people living with Huntington’s who have greatly improved their quality of life by getting the right help and support and the right interventions at the right time.
There are many different kinds of support and help that people with Huntington’s can try, to manage their symptoms and live as well as possible. Their carer and family may also need additional support, practically and emotionally.
In the later stages of the disease more care and support will be needed.
Early stages
Early symptoms may include slight, uncontrollable muscular movements; stumbling and clumsiness; lack of concentration and short-term memory lapses; depression and changes of mood and personality.
- Making uncontrollable movements (chorea) while at the same time, it can become harder to make the movements such as doing up buttons or turning the pages of a book
- Difficulty with organising and planning
- Behaving differently - becoming angry, irritable or frustrated
- Activities take longer or are hard to finish
- They may find it harder to deal with new situations
- They may become more forgetful
Middle stages
Symptoms of the middle stage of the illness often revolve around changes in muscles and movement, although changes in behaviour may also become more significant and challenging too.
- The person's muscles are likely to start making involuntary contractions and become stiff and rigid
- Their movements will slow down and their arms and legs may become clumsy
- They may start to experience changes in how they speak as forming words becomes more tricky. Speech therapy and certain equipment can help a lot with this
- It may become difficult for them to swallow, making eating difficult. Support from a dietician can help to make sure they keep your weight up
- Their behaviour may change as feelings of anger, frustration or depression become quite intense. This can be quite challenging for their family or carers. It doesn’t happen to everyone but it’s more likely to happen if the person starts to develop symptoms in their teens
Later stages
The nature of Huntington’s means that over a period of many years, the disease progresses until the end of life.
Later on, people with Huntington's disease experience difficulties with:
- weight loss and nutrition
- speech and swallowing
- movement and stiffness
- communication
These are just a few of the possible symptoms. It is important to pay attention to the symptoms that are causing them and their family the greatest difficulty, emotionally or practically, at the time.
Sometimes the psychological and emotional sides of living with the disease are more of a problem than the physical side. It can be mentally difficult for the person to cope with having a serious illness, and extremely frustrating not to be able to do more of the things that they could easily do before.
