Treatment and support - Huntington's disease

There's currently no cure for Huntington's disease or any way to stop it getting worse. But treatment and support can help reduce some of the problems caused by the condition.

In many areas, there are Huntington's disease clinics run by a specialist doctor and nurse, who can offer treatment and support and refer you to other specialists if needed.

Research into new treatments is ongoing and there have been some promising results recently.

Medicines

Medicines can help reduce some of the problems caused by Huntington's disease, but they don't stop or slow down the condition.

These include:

Some of these medicines aren't licensed for Huntington's disease, but have been found to help relieve the symptoms.

Most of these medicines can cause troublesome side effects. Speak to your doctor about the possible benefits and risks of taking them.

Help with everyday tasks

Daily tasks such as getting dressed, moving around your house and eating can be frustrating and exhausting if you have Huntington's disease.

An occupational therapist can look at activities you find difficult and see if there's another way you can do them.

They can also recommend changes that could be made to your house and equipment you can use to make things easier for you.

These can include:

  • putting in ramps so an area can be accessed in a wheelchair
  • fitting a stairlift
  • installing grab rails – for example, by the stairs or beside the bed
  • using electric can openers, electric toothbrushes and kitchen utensils with large handles that are easier to hold
  • voice-controlled lights or voice-controlled software on a computer

Read more about how occupational therapy can help and how to get it.

Help with eating and communication

A speech and language therapist and a dietitian can help if you have difficulty communicating and eating because of Huntington's disease.

For example, they can advise about:

  • alternative ways of communicating – such as electronic speech devices or picture charts
  • a high-calorie diet to help prevent weight loss
  • ways to make food easier to chew and swallow

At some point, a feeding tube that goes directly into your stomach may be needed.

If you don't want to be fed in this way, you may want to consider making an advance decision that outlines how you'd like to be cared for in the later stages of your condition.

Help with movement and balance problems

If you have Huntington's disease, it's important to try to stay as active as you can. This can help you feel better both physically and mentally.

Getting around can be difficult if you have problems with co-ordination and balance, but even regular walking with the use of aids like walking sticks can be beneficial.

A physiotherapist can also help with movement problems.

They may recommend things like:

  • an exercise plan
  • moving and stretching your joints (manipulation)
  • massages

Read more about how physiotherapy can help and how to get it.

Research into new treatments

Research is underway to find new treatments for Huntington's disease.

Progress has been made in identifying possible ways of slowing down or halting the condition by "switching off" the faulty gene that causes it.

Several treatments are now going through clinical trials. If they're found to be safe and effective, they might be available in several years' time.

You can find out more by visiting the European Huntington's Disease Network, HD Buzz, and the Huntington's Disease Association. You can also ask your specialist doctor or nurse.

More information about care and support

The Huntington's Disease Association has more information about getting help for Huntington's disease, including advice about:

  • behavioural problems
  • communication skills
  • sexual problems
  • diet, eating and swallowing
  • seating, equipment and adaptations
  • your options when full-time care is needed
  • benefits you may be entitled to

You may also find it useful to read NHS guidance on:

Driving

You should discuss any concerns about driving with your doctor.

If you hold a driving licence and have symptoms caused by Huntington's disease, you're legally required to contact the DVLA.

The DVLA will ask you for details of your doctor to seek further information. Many people are still allowed to drive, but this will be reviewed regularly.

There's no requirement to contact the DVLA if you haven't developed symptoms. If in doubt, discuss this with your doctor.

Find out more about driving with a medical condition

Page last reviewed: 13/02/2018
Next review due: 13/02/2021