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.

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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 symptoms2,14,15:

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 symptoms2:

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 symptoms15:

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

 

    • Huntington’s Disease Collaborative Research Group. A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington’s disease chromosomes. Cell. 1993;72:971-983.

      Huntington’s Disease Collaborative Research Group. A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington’s disease chromosomes. Cell. 1993;72:971-983.

    • Ghosh R, Tabrizi SJ. Huntington disease. In: Geschwind DH, Paulson HL, Klein C, eds. Handbook of Clinical Neurology, Vol 147. Elsevier BV; 2018;255-278. https://doi.org/10.1016/B978-0-444-63233-3.00017-8

      Ghosh R, Tabrizi SJ. Huntington disease. In: Geschwind DH, Paulson HL, Klein C, eds. Handbook of Clinical Neurology, Vol 147. Elsevier BV; 2018;255-278. https://doi.org/10.1016/B978-0-444-63233-3.00017-8

    • Huntington G. On chorea. J Neuropsychiatry Clin Neurosci. 2003;15(1):109-113.

      Huntington G. On chorea. J Neuropsychiatry Clin Neurosci. 2003;15(1):109-113.

    • Moscovich M, Munhoz RP, Becker N, et al. Américo Negrette and Huntington’s disease. Arq Neuropsiquiatr. 2011;69(4):711-713.

      Moscovich M, Munhoz RP, Becker N, et al. Américo Negrette and Huntington’s disease. Arq Neuropsiquiatr. 2011;69(4):711-713.

    • Rodrigues FB, Byrne LM, Wild EJ. Biofluid biomarkers in Huntington’s Disease. Methods Mol Biol. 2018;1780:329-396.

      Rodrigues FB, Byrne LM, Wild EJ. Biofluid biomarkers in Huntington’s Disease. Methods Mol Biol. 2018;1780:329-396.

    • Yohrling G, Raimundo K, Crowell V, Lovecky D, Vetter L, Seeberger L. Prevalence of Huntington’s Disease in the US [abstract taken from HSG 2019]. Neurotherapeuticshttps://doi.org/10.1007/s13311-019-00788-3. Published October 8, 2019.

      Yohrling G, Raimundo K, Crowell V, Lovecky D, Vetter L, Seeberger L. Prevalence of Huntington’s Disease in the US [abstract taken from HSG 2019]. Neurotherapeuticshttps://doi.org/10.1007/s13311-019-00788-3. Published October 8, 2019.

    • Bates GP, Dorsey R, Gusella JF, et al. Huntington disease. Nat Rev Dis Primers. 2015;1:15005.

      Bates GP, Dorsey R, Gusella JF, et al. Huntington disease. Nat Rev Dis Primers. 2015;1:15005.

    • Anderson KE, van Duijn E, Craufurd D, et al. Clinical management of neuropsychiatric symptoms of Huntington disease: expert-based consensus guidelines on agitation, anxiety, apathy, psychosis and sleep disorders. J Huntingtons Dis. 2018;7(3):355-366.

      Anderson KE, van Duijn E, Craufurd D, et al. Clinical management of neuropsychiatric symptoms of Huntington disease: expert-based consensus guidelines on agitation, anxiety, apathy, psychosis and sleep disorders. J Huntingtons Dis. 2018;7(3):355-366.

    • Roos RAC. Huntington disease: a clinical review. Orphanet J Rare Dis. 2010;5:40. doi:10.1186/1750-1172-5-40.

      Roos RAC. Huntington disease: a clinical review. Orphanet J Rare Dis. 2010;5:40. doi:10.1186/1750-1172-5-40.

    • Frank S. Treatment of Huntington’s disease. Neurotherapeutics. 2014;11(1):153-160.

      Frank S. Treatment of Huntington’s disease. Neurotherapeutics. 2014;11(1):153-160.

    • Nance M, Paulsen JS, Rosenblatt A, Wheelock V. A Physician’s Guide to the Management of Huntington’s Disease. 3rd ed. New York, NY: Huntington's Disease Society of America; 2011.

      Nance M, Paulsen JS, Rosenblatt A, Wheelock V. A Physician’s Guide to the Management of Huntington’s Disease. 3rd ed. New York, NY: Huntington's Disease Society of America; 2011.

    • Huntington’s Disease Society of America. HDSA Family Guide Series: Physical and Occupational Therapy—Huntington’s Disease. http://hdsa.org/wp-content/uploads/2015/03/PhysicalOccupationalTherapy_FamilyGuide.pdf. Accessed May 17, 2019.

      Huntington’s Disease Society of America. HDSA Family Guide Series: Physical and Occupational Therapy—Huntington’s Disease. http://hdsa.org/wp-content/uploads/2015/03/PhysicalOccupationalTherapy_FamilyGuide.pdf. Accessed May 17, 2019.

    • Wild EJ, Boggio R, Langbehn D, et al. Quantification of mutant huntingtin protein in cerebrospinal fluid from Huntington's disease patients. J Clin Invest. 2015;125(5):1979-1986.

      Wild EJ, Boggio R, Langbehn D, et al. Quantification of mutant huntingtin protein in cerebrospinal fluid from Huntington's disease patients. J Clin Invest. 2015;125(5):1979-1986.

    • Gusella JF, Wexler NS, Conneally PM, et al. A polymorphic DNA marker genetically linked to Huntington’s disease. Nature. 1983;306:234-238.

      Gusella JF, Wexler NS, Conneally PM, et al. A polymorphic DNA marker genetically linked to Huntington’s disease. Nature. 1983;306:234-238.

    • Kendrick LM, Hudgell D, Hellman A, Weaver MS. Attending to total pain in juvenile Huntington disease: a case report informed by narrative review of the literature. J Palliat Care. 2019. doi:10.1177/0825859719835560.

      Kendrick LM, Hudgell D, Hellman A, Weaver MS. Attending to total pain in juvenile Huntington disease: a case report informed by narrative review of the literature. J Palliat Care. 2019. doi:10.1177/0825859719835560.

    • Piira A, van Walsem MR, Mikalsen G, Nilsen KH, Knutsen S, Frich JC. Effects of a one year intensive multidisciplinary rehabilitation program for patients with Huntington’s disease: a prospective intervention study. http://currents.plos.org/hd/index.html%3Fp=7893.html. Accessed January 16, 2020.

      Piira A, van Walsem MR, Mikalsen G, Nilsen KH, Knutsen S, Frich JC. Effects of a one year intensive multidisciplinary rehabilitation program for patients with Huntington’s disease: a prospective intervention study. http://currents.plos.org/hd/index.html%3Fp=7893.html. Accessed January 16, 2020.