Each child of an affected parent has a 50 per cent chance of inheriting the disease.

It affects both males and females equally and all races.

There is as yet no cure but much can be done to help the person with HD.

Symptoms may begin from childhood to later life, but usually appear between the ages of 3-50.

The duration of the disease varies with each person, often progressing over a period of 15-25 years.

In March 1993, researchers identified the gene that is responsible for the condition and predictive testing is now possible from the age of 18.

HD creates a ripple effect because multiple generations of the same family are likely to experience the disease. Therefore, while one in 15,000 people in New Zealand have the disorder, one in 1500 are directly affected by it.

HD is referred to as a “disease of families”. In many families, more than one member may have HD at the same time and many members are at risk of developing the disease. Every member of the family is affected emotionally, financially and socially and all family members need support, advice and care.

SIGNS AND SYMPTOMS

Each individual with HD is different and has complex, unique needs.

HD can be looked at as a disease made up of three disorders – a movement disorder, a cognitive (thinking) disorder and an emotional disorder.

The HD person is likely to have marked involuntary movements and problems with balance resulting in frequent falls.

The muscles of speech are affected, words becoming slurred and speech becomes slow. Difficulty with communication increases as the condition progresses.

Chewing and swallowing become increasingly difficult and respiration problems develop.

A person with HD may lose weight and is often hungry – more calories are needed, often up to 5000 or more per day.

They may have difficulty with planning, organising and completing tasks and may find it difficult to change easily from one activity to another. Attempting to do two tasks at the same time often proves difficult. They often have difficulty initiating an activity and may lack motivation. They may become inflexible, lack judgment and concentration and experience short-term memory loss. Decision-making may be impaired.  

There may be emotional changes with mood swings, periods or anger, irritability and obsessive and irrational behaviour. They may suffer from depression, anxiety and panic attacks, hallucinations and periods of delusion.