Even if you have no symptoms, it can be very difficult to cope with having Huntington’s in the family or the fear of being at risk.

Testing positive for Huntington’s

If you’ve just found out you have the faulty gene, you may be feeling in a state of shock and have lots of fears and worries about what the future might hold. You should get follow up support from a genetic counsellor at the clinic that did your test to help you come to terms with the news. Your local Specialist Huntington’s Disease Adviser (SHDA) can also give you information and support.

Many people in this situation worry that a stumble or fall, a moment of forgetfulness or an argument may be the start of symptoms, and this can cause a lot of anxiety.
Whether or not your ‘symptom’ is a result of Huntington’s, it is probably better to seek support, than to avoid it. That way you take control of your health and tackle any issues head on, rather than avoid them. Talking to someone else about your concerns can also be helpful.

See seeking support (below) for some suggestions about who to contact to help you deal emotionally with testing positive for Huntington’s.

Testing negative for Huntington’s

People who have had a negative test can also struggle to cope. Sometimes people have lived their lives thinking they would get Huntington’s. When they discover the test was negative they feel they should be happy, but also feel that they have lost a huge part of their identity.

It’s also common to feel guilty after a negative test, especially if your siblings have tested positive or remain at risk. People who have had a negative test can find that maintaining a role in the Huntington’s community can be very helpful, for example through support groups, fundraising and research. There is also a private Facebook group available for people who have had a test for the Huntington’s gene and found to be negative.

You can be linked into this group by contacting Helen James or Diana King.

Seeking support

People – in any challenging situation - can find it useful to talk to someone about their feelings, and it doesn’t always seem appropriate to talk to friends and family.

• Your local Specialist Huntington’s Disease Adviser (SHDA) can help and answer questions.
• You can ask your GP to refer you for counselling, or you can contact your closest specialist clinic to see if there is support they can offer.
• Many people find that talking to others who are in a similar situation can really help. We have local branches and support groups that enable people affected by Huntington’s to support each other.
• If you are under 22, our dedicated youth worker is a very good person to talk to about anything that’s worrying you or any questions you have about Huntington’s. Our youth worker also runs the HDA Youth Engagement Service (HDYES).
• HDA’s annual youth conference is an opportunity for 18-35 year olds who are affected by Huntington’s to meet and support each other. Please contact us to register your interest in attending the next conference.

Living with Huntington’s disease can be very difficult, for you if you have it and for your family. The right support can make a big difference and we’re here to help so contact us if you don’t find what you need.