Helpline:
Living with Huntington’s disease, or supporting someone who is, can bring a wide range of emotions. Feeling low, anxious, frustrated, or overwhelmed at times is normal. Looking after your mental wellbeing is really important especially if you are affected by or caring for someone with Huntington's disease.
Being at risk of, caring for someone or living in a family where there is Huntington's can impact your mental wellbeing. The symptoms of Huntington’s can also affect mood, behaviour, and thinking. All of this can lead to challenges such as:
Low mood or depression
Anxiety or irritability
Changes in motivation or concentration
Feelings of grief, anger, or loss
Stress related to caring or future planning
There are people who can help so you don’t have to struggle alone. Your GP or neurologist can refer you for psychological support or our Specialist Advisers can help signpost you to other options that could help.
Acceptance and Commitment Therapy (ACT) is used to support people living with long-term conditions. ACT starts with acknowledging and accepting the reality of what cannot be changed: the diagnosis, the symptoms, and the challenges that follow.
Charities that specialise in mental health such as MIND, Samaritans, CALM and Rethink Mental Illness can be a good place to get advice and support and also offer sign posting to beneficial mental health services.
The Huntington's Disease Association holds a list of private counsellors with a specialist interest in Huntington's disease. You can also find a private counsellor through the British Association for Counselling and Psychotherapy.
The Huntington's Disease Association holds a list of private psychologists with a specialist interest in Huntington's disease. You can also find a private psychologist through the Bristish Psychological Society.
Grief Chat offer a free online chat with a grief counsellor.
NHS offer a range of talking therapies such as counselling and cognitive behavioral therapy for anxiety and depression. Please note that waiting lists may be months long. NHS also have a self-help service as well as urgent help for mental health crisis.
Our youth service - HDYES have a wellbeing box that was created by young people for young people. It has a range of wellbeing resources such as mood boosters, ways to stay grounded and coping strategies.
Medication is often used for people with Huntington's to manage anxiety and depression as these can sometimes be symptoms of the disease.
We have created mental health tips that you can download for yourself or to share with someone in need.
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Awareness, Community stories
Awareness, Community stories, Support
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