Scottish Huntingtons Association

Just Found Out

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. 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.