FAQ
My mother has just been diagnosed with Huntington's disease, does this mean I will definitely have the disease as well?
Huntington's disease is inherited in an autosomal dominant manner, this means that a person only needs to carry one copy of the mutant allele to have the disease. As only one copy of the mutant allele causes the disease, a sufferer will also have one healthy copy of the gene; only one of these copies is passed on from parent to child. Therefore having a parent with the disease means that you will have a 50:50 chance of inheriting it. The best thing to do is go and visit your doctor; a blood test and cognitive tests will reveal whether you have also inherited this mutant copy of the gene. Remember just because one of your parents has the disease does not guarantee you will have it as well.
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I have been suffering from a lack of concentration and forgetfulness, as well as being clumsy. Is it possible I am developing Huntington's disease?
There can be many explanations for these signs, do not just jump to the worst conclusion. They could simply be due to events going on in your life, or simply getting old, depending on your age. If these symptoms continue or get worse, you would be advised to go and see your doctor who will be able to carry out some tests and diagnose your problem, if there is one. Also have a think about your family history and see if there have been any instances of the disease in your family.
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What tests are involved in diagnosing Huntington's disease?
A blood test is used for genetic analysis to see if someone carries the faulty copy of the Htt protein. Neurological examinations are also carried out, which will look at such things as balance, coordination and muscle strength. fMRI, CT and PET scans may also be carried out to get a closer look at areas of the brain implicated in the disease.
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If you are positive for the mutant Hungtintin gene, will you definitely develop the disease?
Sadly yes. If genetic tests have come back positive, then there is no way of preventing the disease. However this does not tell you anything about when a person first shows symptoms of the disease, and some people can be up to the age of 50 (and sometimes even later) before the disease first begins to manifest itself.
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Is there a cure for the disease?
Currently there is no actual cure for the disease. Many labs throughout the world are developing new methods to try and prevent the disease occurring or halt it's progression, but at the minute none have been successful. (The treatment section of this website demonstrates some of the approaches being taken). Although there is no actual cure for the disease, there are methods that try and halt its progression. These include medications that treat the different aspects, such as depression and dystonia, but also diet solutions to try and prevent weight loss, or the use of physical activity to help improve physical and mental well-being. The onset of the disease does not result in death straight away, and often people have up to 20 years before death due to related complications.
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What is the life expectancy for a person diagnosed with Juvenile Huntington's disease?
Juvenile HD is diagnosed in people under the age of 20, after diagnosis patients have around 10 years to live, but this is an approximate figure and can vary from person to person.
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Can certain lifestyles increase the chance of developing the disease?
HD is passed on in an autosomal dominant mode of inheritance, meaning that a certain way of living cannot increase, or for that matter decrease, your chances of getting the disease. If you are at risk of the disease due to a family prevalence or have already been diagnosed with it, then it is best to lead a healthy and active lifestyle, as this can slow the progression of the disease. Having an affected parent gives a child a 50% chance of inheriting HD.
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Where can I find additional information?
The origin of the majority of information on this website can be found in the references and links page. Alternatively, the best people to see regarding HD is your doctor, or any of the many support facilities available throughout the country.
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