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Living with HD
Test Results Issues
Testing Postive for
HD - Carrying the Gene
Discovering you carry the genetic change is likely to be a very difficult time in your life and everyone will deal
with this information in their own way, however it is normal for people to experience a range of emotions.
Some people may initially experience denial or shock at the news then possibly anger. It can also be normal to
look for someone to blame. You may experience fear, depression or sadness. It’s important to allow yourself
to experience your own ways of dealing with your feelings.
Don’t be hard on yourself, allow yourself time and seek as much support as you need to help work through these feelings. You may find that you fluctuate
between these feelings at varying times, again this is a normal reaction in dealing with the news you have been given.
Some people may speak openly about their situation and seek counselling support to discuss their concerns and others may not wish to discuss it with anyone,
including those closest to them. The important people in your life will also be deeply affected by a positive test and are likely to experience many of the same
feelings as you. Because everyone deals with their feelings in a different way it is vital thatyou and those close to you respect one another’s way of coping even
if you do not agree with it. It may be an idea to write down the questions you have and bring them with you at your next Genetic clinic appointment.
Testing negative for
the gene
If you have chosen to have the genetic test and learn that you do not carry the HD gene, you may still experience a range of emotions and need support. For
example, it is not uncommon for someone receiving a negative test result to on the one hand feel relief while on the other hand to experience guilt especially if other
family members have HD or receive a positive test result. Your Regional Genetic Centre will always arrange a follow-up appointment to discuss any issues and
concerns. You can also contact the Scottish Huntington’s Association and talk to one of their Advisors.
Scottish
Thistle House,
Tel; 01505 322245,
email: sha-admin@hdscotland.org.uk
The Scottish Huntington's Association is
a Registered Charity: No 121496.