People can start to show the symptoms of Huntington's disease at almost any age, but most will develop problems between 35 and 55.
Generally, the disease progresses and gets worse for around 10 to 20 years until the person eventually dies. Symptoms vary between people; there is no typical pattern.
Early symptoms, such as personality changes, mood swings and unusual behaviour, are often overlooked at first and attributed to something else.
Some people with Huntington's may refuse to accept their illness or the seriousness of it.
Behavioural changes
Behavioural changes are often the first symptoms to appear in Huntington's disease and can be the most distressing. These symptoms often include:
- a lack of emotions and not recognising the needs of others in the family
- alternating periods of aggression, excitement, depression, apathy, antisocial behaviour and anger
- difficulty concentrating on more than one task, which causes irritability
- short-term memory lapses
- problems with orientation
A person with Huntington's may display a lack of drive, initiative and concentration that may make them appear lazy. This is not the case; it is just the way the disease affects their personality. Also, someone with Huntington's may develop a lack of interest in hygiene and self-care.
Read the Huntington Disease Association (HDA) factsheet for more information on Behavioural Problems (links to external site).
Psychiatric problems
Many people with Huntington's disease have depression – this occurs as part of the disease, not just as a response to the diagnosis. Symptoms of depression include continuous low mood, tearfulness and feelings of hopelessness.
A few people may also develop problems such as obsessive behaviours and, sometimes, schizophrenia.
Studies have shown that people with Huntington's disease are more likely to think about committing suicide, particularly near the time of diagnosis when symptoms are already apparent, and when the person starts to lose their independence. Find out how to get help if you think someone you care for is suicidal.
Movement problems
Huntington's disease affects movement. Early symptoms include slight, uncontrollable movements of the face, and jerking, flicking or fidgety movements of the limbs and body. These move from one area of the body to another and can cause the person to lurch and stumble.
As the disease progresses, the uncontrollable movements are more frequent and extreme. This may change over time so that movements become slow and muscles more rigid.
Feeding problems
People with Huntington's disease tend to lose weight despite having a good appetite. They can find eating tiring, frustrating and messy because the muscles in the mouth and the diaphragm muscles do not work properly, due to the loss of control.
Loss of co-ordination can lead to spilling or dropping food. Swallowing is a problem, so choking on food and drink, particularly thin drinks such as water, can be a common problem. You may be referred to a dietitian or a speech and language therapist if you find it difficult to swallow. In some cases, a feeding tube can be inserted (see Living with Huntington's disease).
For more information, read the HDA factsheet on Eating and Swallowing Difficulties (links to external site).
Communication problems
Communication and cognition (perception, awareness, thinking and judgement) are affected by Huntington's disease.
People with Huntington's often have difficulty putting thoughts into words, and they slur their speech. They can understand what is being said but may not be able to respond or communicate that they understand. Impaired breathing can make speech difficult.
Sexual problems
People with Huntington's disease can have problems with sexual relationships. This is usually a loss of interest or, less commonly, making inappropriate sexual demands. For more information on this, read the HDA factsheet on Sexual Problems (links to external site).
