Huntington’s disease is an illness caused by a faulty gene in your DNA (the biological ‘instructions’ you inherit which tell your cells what to do). If you have Huntington’s, it affects your body’s nervous system – the network of nerve tissues in the brain and spinal cord that co-ordinate your body’s activities.
Our Specialist Huntington’s Disease Advisers can offer advice and information, and let you know about local services and support groups. If you haven’t already made contact with your local Specialist Huntington’s Disease Adviser we would advise you to do so.
Huntington’s can cause changes with movement, learning, thinking and emotions. Once symptoms begin, the disease gradually progresses, so living with it means having to adapt to change, taking one day at a time. Living with Huntington’s disease can be very challenging. Getting the right information and support is vital and we’re here to help.
Our website is here to help you to understand Huntington’s disease and the kinds of support that may be available to you. But there is a huge amount of information on here, some of which might be upsetting.
Our advice is:
- Take your time with the website.
- Look for the pages that you think might be relevant to you and dip in and out.
- Take a break if you start to feel overwhelmed.
- Have someone with you to support you while you look through the site, if you feel you need it.
Our Specialist Huntington’s Disease Advisers are here to help you. They can talk through your personal situation and guide you through your next steps. They can also provide a listening ear if you just need to talk.
Juvenile Huntington’s is quite rare. Less than 10% of people with the disease will have Juvenile-onset. This can make dealing with it quite an isolating experience for you and your family, and meeting others in the same situation can help.
For further information please get in contact with us or visit our Facebook Page, website which has a host of advice about support networks, guides, testimonies and links.