Best practice in Juvenile Huntington’s disease

Huntington's Disease Association fact sheets

A brief guide to Juvenile Huntington’s disease for children’s hospices and palliative care services
A young person with Juvenile Huntington’s disease at school
Challenging behaviour in Juvenile Huntington’s disease


Books and guides

  • Huntington’s Disease in Children and Teenagers: A Guide for Professionals
    by Neil Glendinning, M.D.

    Chapters include: Definitions of HD, Genetics, Genetic Testing in Children, Pathology, Prevalence, Age of Onset, General Remarks on JHD, Clinical Picture, Diagnosis and Differential Diagnosis, Speech and Communication Problems, Swallowing and Alternative Feeding, Physiotherapy, General Management with flow chart, Management of Mental Disorders, Treatment, Schooling, Social Services and Further Reading.

    Copies cost £1.50 – please contact [email protected] or 0151 331 5444 to order your copy.
  • The Juvenile HD Handbook: A Guide for Families and Caregivers (2nd edition)
    Edited by Martha Nance

    Chapters include: The Diagnosis of HD in a child, After the Diagnosis, Medical Care, Daily Life, The Late Stages, Financial, Legal and Social Service Issues, Caring for the Caregivers and Hope for the Future. Each section is divided into a number of sub-sections.

    This guide is available to download from the Huntington’s Disease Society of America (HDSA)
  • Juvenile Huntington’s Disease: A Resource for Families, Health Professionals and Caregivers
    By the Huntington Society of Canada

    Chapters include: About Juvenile Huntington’s Disease (Overview, The genetic basis of JHD, First Symptoms, Diagnosis), Living with JHD (Schooling, Physical and Occupational Therapy, Speech Therapy, Swallowing, Behaviour and Judgement, Seizures, Other Drug Treatment, Juvenile HD and Family Life), and Later Stages of the Disease (Leisure and Social Time, Institutionalisation, Death, Hope for the Future).

    This guide is available to download from the Huntington Society of Canada
  • Juvenile Huntington’s Disease: and other trinucleotide repeat disorders

    Edited by Oliver W.J. Quarrell, Helen M. Brewer, Ferdinando Squitieri, Roger A. Barker, Martha A. Nance, G. Bernhard Landwehrmeyer. Oxford University Press. ISBN 978-0199236121.

    This book has chapters on family accounts, the history of JHD, the clinical phenotype, neuropathology, molecular mechanisms, mouse models, other polyglutamine disorders, the diagnostic challenge, treatment of JHD, psychosocial issues, challenges in assessment.

Journal articles

There are a range of articles from medical journals on Juvenile Huntington’s disease. Please contact our Specialist JHD Adviser, Helen Santini, on [email protected] or 01279 507656 if you’d like to find our more or to request a copy.

More information

If you’re looking for help and you can’t find what you’re looking for, please get in touch with Helen Santini, our Specialist JHD Adviser, on [email protected] or 01279 507656.