The campaign Mindful of Huntington's was designed to show the impact of Huntington's disease on people with the disease and their families. 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. The disease is genetic, if a parent has it you have a 50% chance of inheriting it.
The campaign aimed to raise awareness of cognitive impairment in people affected by Huntington's disease and members of the family. Our findings have shown over half of people with Huntington’s Disease are being denied access to mental health support services because of their condition. We explore and demonstrate the impact of this in the film.
We share perspectives from someone with Juvenile Huntington's disease and someone who grew up in a household affected by Huntington's. We interviewed healthcare professionals including one of our own Specialist Huntington’s Disease Advisors who talk about the impact that cognitive impairment has on people and how early intervention and an understanding of the disease is paramount.
We aimed to highlight that the disease is more than the physical effects.
Thank you to Holly, Billy, Jenny, Poppy and Alex for taking part in the film. Thank you to the West Midlands Regional Huntington’s Disease Service at Birmingham and Solihull Mental Health NHS Foundation Trust.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or visit our website, www.hda.org.uk.
We’re here to help people living with Huntington’s disease live a better life.
What is Huntington's disease?
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. Although there is, as yet, no cure, you can learn to manage symptoms more effectively to improve your quality of life. The symptoms of Huntington’s disease vary widely between people. Even people in the same family may be affected differently. However, changes usually affect three main areas:
Movement (movements may happen that you don’t expect, while doing what you do want to do becomes more difficult)
Cognition (difficulties with planning and thinking)
Behaviour (changes in behaviour and personality)
The disease is genetic, if you have a parent with the disease you have a 50% chance of inheriting it.
What does the Huntington's Disease Association do?
We improve care and support services for people with Huntington’s disease, educate families and professionals, and champion people’s rights.
Together we will build a better life for anyone affected by Huntington’s disease.
To enable everyone affected by Huntington's disease to live life to their full potential by:
. Improving care and support
. Educating families and the professionals who work with them
. Championing the needs of the Huntington's community by working together
. Influencing decision makers to tackle discrimination and secure equity of access to services
We are always Inspired by our community.
We align with the following UN Sustainable Development Goals: