If you're showing symptoms

Although there is currently no cure, there are many ways to get help with the symptoms and challenges of living with Huntington’s disease.

It can be helpful to consider any lifestyle or practical changes you have not already made, that might make life easier - for example see living well, employment, emotional support and financial matters.

There are also different types of care that you might need to access at different times.

These include:

  • Social care - help with things like washing and dressing, that is arranged privately or through the adult social services department of your local council.
  • Medical care from healthcare professionals - the involvement of neurologists, neuropsychiatrists, dieticians, speech therapists and other professionals can also enable you to manage your symptoms more effectively and positively.
  • Care in a nursing or residential home, should this at some stage be the best option for you or the person you are caring for.

If you meet certain criteria, you may qualify for NHS continuing healthcare which means the NHS is considered responsible for providing for and fully funding all your needs in any setting. This could be in your own home, a care home or hospice.

In England, the NHS can arrange care for you or you can choose to receive the funding for your care as a direct payment, known as a personal health budget. Personal health budgets are not currently available in Wales, Scotland or Northern Ireland.

The rules around who qualifies are complex and the best way to find out if you are eligible is to ask your GP or social worker to arrange an assessment for you. In addition, your local Specialist Huntington’s Disease Adviser SHDA can advise and support you throughout your illness, as well as supporting the other healthcare professionals involved in your care, if they lack knowledge or experience of Huntington’s.

We also have information for GPs about Huntington’s care, which you can ask us to send to your doctor on request. Just contact us for more information.

Getting help and support

Getting the care you need

People with Huntington’s and their families may need a lot of support to help them at different stages. As the disease progresses, symptoms and needs change too.

Getting financial help

Living with Huntington’s can have an impact on your finances, which can add to the challenge of what is already a difficult situation.

Life with Huntington's

Keeping active and doing things you enjoy can help you cope with the big challenges Huntington’s can throw at you, whether you have the disease yourself or you’re caring for someone who has it.

Practical matters

There are certain practical matters to consider if you have Huntington’s disease or are caring for someone who has it. It’s a good idea to take some time to look at these and plan ahead.

Family stories