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Juvenile Huntington's Disease - what is Juvenile HD? 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% 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. See also:
Juvenile HD newsFrom January 2007, the Roald Dahl Foundation will fund the Care Adviser for Juvenile Huntington's Disease post. The Roald Dahl Foundation kindly funded the JHD Family Weekend in June 2006. We would like to thank them for their kind support.
The Roald Dahl Foundation is a UK-based registered charity offering a Programme of grant giving to charities, hospitals, and individuals in the UK. They support many varied projects, offering practical assistance to children and families in three areas: neurology, haematology and literacy. For more information about the Roald Dahl Foundation, please visit their website 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 Brewer Care Adviser for Juvenile Huntington's Disease, Tel 01279 507 656 or email helenbrewerhda@hotmail.com
Juvenile HD ProjectThe HDA have received a grant from the Department of Health to find out more about JHD. This grant is being used to fund a project.
Phase 1 of this project is to develop a register of people with Juvenile Huntington's Disease. This register will allow us to find out more about the people affected with JHD and to facilitate future research. Phase 2 of this project is to carry out interviews with the parents/guardians of young people with JHD to find out what their needs are and the issues they are facing. Hopefully this will enable us to provide better services for families and to support families better.
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