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Information - Huntington's Disease
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HD is not a condition which is evident at birth. In fact, symptoms will not usually appear until a person is between 35 and 45 years of age.
HD is caused by a defective gene. A gene is a basic unit of inheritance. Genes are the means by which a child inherits all his or her characteristics. For example there are genes for height, eye colour and baldness. Genes are transmitted to a child at the time of conception. A person carries this set of genes all his or her life. All our genes are in pairs and we inherit one member of the pair from our mother and the other from our father. Sometimes an alteration can occur in a gene so that the gene does not function normally. If the alteration occurs in one of the HD genes then symptoms of HD will eventually appear.
HD and inheritance
If a person inherits the altered gene for HD, eventually symptoms of the condition will begin to appear. For a small group of people these symptoms may be evident before they are 35 and for another small group there may not be signs of the disease until after age 45.
Sometimes people who inherit the altered gene for HD will die before the symptoms of HD appear. They may be involved in an accident or have some other illness such as a heart attack. In such cases doctors or other family members might not know that the HD gene was present.
Any child born to a person who carries the altered gene for HD has a 50 per cent chance of inheriting the altered gene. It follows that the child equally has a 50 per cent chance of not inheriting the altered gene. It does not matter whether or not the parent is displaying symptoms of HD when the child is conceived since the symptoms of HD usually appear after a person has begun, or even completed a family. What matters is whether or not they have the HD gene in their genetic make-up. If a person does not inherit the altered gene for HD then his or her children are not at risk of developing HD.
Short term memory may be reduced, with a person affected by HD forgetting small recent happenings, such as the need to pass on a telephone message, turn off the kettle, or attend an appointment made yesterday. Tasks requiring intense concentration or much planning and judgement may become more difficult. Examples may include arithmetic tasks or planning to keep up with a heavy business schedule. Over time concentration for activities such as reading and demanding conversation may be affected.
While HD does impact upon memory, planning and judgement, it does not affect a person's orientation. In other words, people affected by HD can be expected to know and recognise the people about them as well as know where they are, and what day it is.
Personality or Emotional Symptoms
Final note concerning symptoms
Perhaps the most common symptom of the condition is chorea; that is dance-like or jerky movement of the arms and legs. These movements begin as twitches and gradually increase over a period of years to larger movements. A small group of people affected by HD does not experience chorea. For this reason the condition previously known as "Huntington's Chorea" is now called "Huntington's Disease".
If symptom watching and concern about being at risk to HD is interfering with your ability to carry out normal activity it may be wise to seek assistance from a GP or counsellor.
Caring for the person with HD
People with HD can improve their quality of life by attempting to remain active physically, mentally and socially. Walking, reading and maintaining friendships are some examples. In short the person with HD should attempt to live as fulfilling a life as possible.
At this point there is no cure for HD, but some symptomatic treatments and support services are available to individuals and families affected by HD. Advice concerning medical treatment should be sought from a GP or specialist.
The predictive testing program for Queensland is coordinated by the Queensland Clinical Genetics Service in conjunction with the Aspley Community Mental Health Centre. Individuals can be referred to the service by their local doctor or specialist by writing to: