What is Juvenile Huntington’s disease?

Juvenile Huntington’s disease (JHD) refers to anyone who develops signs or symptoms of HD before they are 20 years old. It is a relatively rare condition and only about 5-10% of people affected with HD will develop symptoms this young. This can make it quite an isolating experience for the person affected by HD, their family, and any professionals that are helping them.

HD in young people can present differently to HD in adults, although this is not always the case. Children, and to a lesser extent teenagers, with HD are more likely to show rigidity of the muscles. It is less common for them to show the chorea (involuntary movements) that is often seen in adults with HD. Epilepsy can occur in some people with JHD, and this occurs more commonly than in adults with HD.

For further information, please contact Helen Santini, Juvenile Huntington’s disease Care Adviser for Juvenile Huntington’s disease, Tel 01279 507 656 or email helen.santini@hda.org.uk

Previous support for the HDA’s Care Adviser for JHD

From January 2007 to December 2009, the Roald Dahl Foundation funded the Care Adviser for Juvenile Huntington’s disease post, and Roald Dahl’s Marvellous Children’s Charity funded the post until October 2012. The Roald Dahl Foundation kindly funded the JHD Family Weekend in June 2006. We would like to thank them for their kind support.

Roald Dahl's Marvellous Children's Charity

Roald Dahl’s Marvellous Children’s Charity provides assistance for children in the UK living with specific haematological (blood) and neurological (brain) conditions.

For more information about Roald Dahl’s Marvellous Children’s Charity, please visit their website at www.roalddahlfoundation.org

Previously, the HDA received funding from the Department of Health enabling us to learn more about JHD. The grant was used to fund a project investigating the impact of JHD on the family and looking at ways that the Association could provide better services and to offer a greater support to families.

If you are interested in any of the above, or wish to find out more about JHD then please contact Helen Santini, Juvenile Huntington’s disease Care Adviser, Tel 01279 507 656 or email helen.santini@hda.org.uk

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