Managing Huntington’s disease

Huntington’s disease impacts families across generations

The more we understand what families go through, the better care we can provide. Hear from individuals with HD and their family members about the impact that Huntington’s disease (HD) has had on their lives.

Help individuals with HD and their families find the support they need:

European Huntington Association (EHA)

International Huntington's Association (IHA)

HD symptom management

HD profoundly impacts the health-related quality of life of affected individuals and their family members. HD is characterised by a triad of cognitive, behavioural and motor symptoms leading to functional decline and progressive loss of independence.7,8  

While there are no currently approved treatments that target the fundamental cause of HD, there are symptomatic treatments and therapies that can provide relief for individuals with HD. A range of potential symptomatic treatments is listed below.5 Research is ongoing into the fundamental cause of HD to identify mechanisms for disease‑modifying therapies that may slow or stop disease progression. 

Jump to the New frontiers in the treatment of Huntington's disease section for more information
 

For individuals who are experiencing motor symptoms5,31,32

Regular assessment of individuals and adjustment of medications are required to target the specific movement disorder as it progresses.

  • Physical therapy can help with physical conditioning, strength, balance and gait
  • Speech and language therapy can assist with communication and swallowing issues

If prescription medication is warranted:

  • Monoamine depletors or neuroleptics have been used for chorea
  • Medications can be prescribed for dystonia, rigidity or bradykinesia

For individuals who are dealing with behavioural symptoms5,26

Regular assessment of individuals is needed for medication and dose management.

  • Psychological therapy may help with various behavioural disorders
  • Proper sleep hygiene can help prevent sleeping disturbances
  • Social support groups are helpful for individuals with HD, so they know they are not alone. See below for more information

If prescription medication is warranted:

  • Nonstimulating selective serotonin reuptake inhibitors can be used for depression
  • Atypical neuroleptics can help with psychiatric symptoms

For individuals who are experiencing cognitive symptoms5,26

Occupational therapy can help with daily functioning such as managing tasks, maintaining routines, as well as maintaining safety and mobility in the home.
 

HD treatment guidelines

To help ensure that individuals with HD receive a consistent level of care, several organisations have established guidelines for the treatment and management of HD.

European Huntington’s Disease Network (EHDN) International Guidelines for Treatment of Huntington’s Disease provides global evidence-based recommendations for everyday clinical practice for the treatment of HD.32

Get the guide

Huntington’s Disease Society of America (HDSA) A Physician’s Guide to Management of Huntington’s Disease is the latest edition of their guidelines, which now shows a much better understanding of the disease’s genetic, biochemical and neuroanatomical basis.26

Get the guide

Help individuals with HD stay connected to the support and resources they may need

Continue to support individuals with HD and their families by sharing beneficial resources.

Advocacy and Support Groups:

Find the most suitable local organisations that can help improve the lives of those affected by HD:

Scientific Organisations:

Organisations can keep you updated on scientific research, such as:

Additional Resources:

Individuals with HD and their families can find more HD news, support and encouragement at sites like:

Listen to the HD insights podcast for interviews with HD experts:

References

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