Information for healthcare professionals
Guides available for professionals
There are a number of guides available for professionals on Juvenile Huntington’s disease, including:
Huntington’s Disease in Children and Teenagers: A Guide for Professionals
by Neil Glendinning, M.D. This guide is available from the Huntington’s Disease Association and costs £6.50. Please contact Head Office of the HDA for a copy. 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.
The Juvenile HD Handbook: A Guide for Families and Caregivers (2nd edition)
Edited by Martha Nance.This guide is available from the Huntington’s Disease Society of America (HDSA) website. Copies can be downloaded from the link above or ordered from the HDSA. It has chapters on: 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.
Juvenile Huntington’s Disease: A Resource for Families, Health Professionals and Caregivers
This guide is available from the Huntington’s Society-Canada website. 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).
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.
The HDA has also collected a number of articles from medical journals on Juvenile Huntington’s disease. A list can be obtained from the Specialist JHD Adviser.
Support from other healthcare professionals
You can gain further information, advice and support from the HDA’s team of Specialist HD Advisers and the Specialist JHD Adviser. They may also be able to provide a training session for your team on JHD, if this is needed.
It may also be possible to put you in contact with other healthcare professionals who have cared for someone with Juvenile HD. If you are interested in talking to someone about any issues, then please contact the HDA. Also, if you are a healthcare professional who has cared for someone with JHD and wouldn’t mind talking to other professionals who are in a similar situation, then the Specialist JHD Adviser would be happy to discuss this with you.
Information on dealing with epilepsy
For specific advice on dealing with severe epilepsy, please contact Epilepsy Action. They have a website with information, www.epilepsy.org.uk, and a Freephone Helpline, Tel: 0808 800 5050. The HDA may also be able to put you in touch with professionals who can discuss the management of epilepsy in JHD with you.
When a child has JHD the family comes into contact with many different professionals. The vast majority of these professionals know very little about JHD. The families generally find professionals who admit this (even if they are giving them very few solutions) much better than those who pretend they know more than they do. Keep an open mind, try to find out as much as possible about JHD and listen carefully to what the family is saying; they generally know far more than most professionals about JHD!