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Living with
Living at Risk
Everyone learns of and deals with the knowledge that
Huntington’s disease is in their family in different ways.
However, knowing that a member of your family carries the genetic change or has
started symptoms of HD
will raise particular issues and questions for you. If your parent carries the genetic change or has symptoms of
Huntington’s disease this places you at 50% risk of also having inherited the genetic change. Learning you are
at risk will probably mean that at some time you will have to think about whether or not to have the genetic
test. This is a very personal choice for each individual and there are no right or wrong decisions to make. Some
people choose to live without knowing their status while others find it easier to know one way or the other. When you are ready to discuss these
issues usually the first step is to arrange an appointment with your local genetic centre. This is normally done through your GP. If you have any
difficulties or concerns with this you can contact the Scottish Huntington’s Association for further advice.
Inheriting the genetic change means that at some point in life it is very likely that Huntington’s disease will start. Symptoms of the disease usually
appear between the ages of 30 and 45, but some people have symptoms before this and others later in life. Family considerations are complex due
to the hereditary nature of HD. You may be worried about the risk status of your children or about starting a family. It is important to discuss your
situation with a genetic counsellor who is the most knowledgeable in this field and can help you understand all the options available.
Your genetic clinic will take you through an educational process to help you fully understand the genetics of the disorder and help you to work through
the decision which is right for you. You may sometimes hear this called genetic counselling. The genetic term used to test for the presence of the gene
when you have no symptoms of HD is called Predictive Testing. The genetic counsellor or doctor will meet with you on a regular basis over a period
of time to allow you the opportunity to fully discuss this and to give you the opportunity to explore the possible consequences a predictive test result
will have in your life. At the end of this process the decision to undergo the test is still yours to make and you can change your mind at any time. A
Genetics specialist carries out predictive testing for HD. Although the test may reveal that you have the genetic change it cannot accurately predict
at which age you will start to exhibit symptoms.
Scottish Huntingtons Association,
Thistle House,
Tel; 01505 322245,
email: sha-admin@hdscotland.org.uk
The Scottish Huntington's Association is
a Registered Charity: No 121496.