Huntington’s Disease Impacts Families for Generations

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

Huntington’s Disease Symptom Management

The Huntington’s disease triad of symptoms is motor dysfunction, cognitive impairment, and behavioral features, like anxiety and depression. 2,11 While there are no currently approved treatments that target the underlying cause of HD, there are symptomatic treatments and therapies that can provide relief for your patients. This is not a comprehensive list of treatments. 2

For patients who are experiencing motor-related symptoms 2,14,15:

Regular patient assessment 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 patients who are dealing with behavioral symptoms 2:

Regular patient assessment is needed for medication and dose management.

  • Psychological therapy may help with various behavioral disorders
  • Proper sleep hygiene can help prevent sleeping disturbances
  • Social support groups are helpful for patients 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 patients who are experiencing cognitive symptoms 15:

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

Huntington's Disease Treatment Guidelines

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

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 neuroanatomic basis. 

Get the guide

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

Get the guide

Help Your Patients Stay Connected to the Support and Resources They May Need

Continue to support your patients and their families by sharing beneficial resources.

 

Advocacy Groups: Nonprofit organizations have been established to help improve the lives of those affected by HD, including Huntington’s Disease Society of America (HDSA), Huntington's Disease Youth Organization, Help 4 HD, and HD Reach.

Scientific Organizations: Organizations like HSG, HDF, and CHDI can keep you updated on scientific research.

Support Groups: Online and in-person groups can help provide safe and caring communities. Find groups near you at HDSA Support Groups and HDYO Support Groups.

Additional Resources: Your patients and their families can find more HD news, support, and encouragement at sites like: Caregiving.com, Caregiver Crossing Radio, Huntington’s Disease News, and HD Buzz.