People can start to show the symptoms of Huntington's disease at almost any age but most will develop problems between the ages of 35 and 55 years.
Generally, the disease progresses and worsens 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 bizarre behaviour are often overlooked at first and attributed to something else.
Some people with Huntington's may seem to refuse to accept their illness or the seriousness of it.
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, and
- 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).
Apart from depression, there is no psychiatric disorder specifically associated with Huntington's, although a few people may develop problems such as obsessive compulsive disorder (OCD), mania and schizophrenia.
Huntington's disease affects movement and 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 alter over time so that movements become slow and muscles more rigid.
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 coordination can lead to spilling or dropping food. Swallowing is a problem, so choking on food and drink, particularly thin drinks like water, can be a common problem. You may be referred to a dietitian or a speech and language therapist if swallowing is difficult. In some cases, a feeding tube can be inserted (see the Living with Huntington's disease section, above).
For more information, read the HDA factsheet on Eating and Swallowing Difficulties (links to external site).
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 slur their speech. They can understand what is being said but may not be able to communicate that they understand or respond. Impaired breathing can make speech difficult.
People with Huntington's disease can experience problems with sexual relationships, such as loss of interest or making inappropriate sexual demands. For more information, read the HDA factsheet on Sexual Problems (links to external site).