Awareness Week 2016: JHD
The focus of this year’s awareness week, which runs from 9 – 15 May, is Juvenile Huntington’s disease (JHD) – the even rarer form of Huntington’s disease.
How you can help this awareness week:
- Share your experiences of Juvenile Huntington’s disease to help us raise awareness – tweet us @hda_tweeting or post a comment at www.facebook.com/hdauk using #HDawarenessweek #JHDaware or email info@hda.org.uk
- Help us support families living with JHD – donate today
- Fundraise for us! Hold a cake sale, coffee morning or challenge yourself to run, swim, cycle, skydive…the list is endless! Request your fundraising pack by emailing events@hda.org.uk and have a look at our list of sponsorship events
JHD Stories
Mark and his family share their experience and advice of Juvenile Huntington’s disease.
About JHD
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.
To learn more about JHD visit our information for families webpage and our JHD pages
Specialist Juvenile Huntington’s Disease Adviser
We are the only organisation in the world with a dedicated Specialist Juvenile Huntington’s Disease Adviser providing information, advice and support for anyone affected by Juvenile Huntington’s disease – contact Helen Santini, Specialist Juvenile Huntington’s Disease Adviser – tel 01279 507 656 or email helen.santini@hda.org.uk
JHD Family Weekend
Our family weekend gives families living with Juvenile Huntington’s disease the chance to create lasting memories and meet others in a similar situation. Below is a video about the weekends or you can find out more on our JHD events page.
Help us to help families affected by JHD
Help us support families living with Juvenile Huntington’s disease – make a donation today.
The focus of this year’s awareness week, which runs from 9 – 15 May, is Juvenile Huntington’s disease (JHD) – the even rarer form of Huntington’s disease.
How you can help this awareness week:
- Share your experiences of Juvenile Huntington’s disease to help us raise awareness – tweet us @hda_tweeting or post a comment at www.facebook.com/hdauk using #HDawarenessweek #JHDaware or email info@hda.org.uk
- Help us support families living with JHD – donate today
- Fundraise for us! Hold a cake sale, coffee morning or challenge yourself to run, swim, cycle, skydive…the list is endless! Request your fundraising pack by emailing events@hda.org.uk and have a look at our list of sponsorship events
JHD Stories
Mark and his family share their experience and advice of Juvenile Huntington’s disease.
About JHD
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.
To learn more about JHD visit our information for families webpage and our JHD pages
Specialist Juvenile Huntington’s Disease Adviser
We are the only organisation in the world with a dedicated Specialist Juvenile Huntington’s Disease Adviser providing information, advice and support for anyone affected by Juvenile Huntington’s disease – contact Helen Santini, Specialist Juvenile Huntington’s Disease Adviser – tel 01279 507 656 or email helen.santini@hda.org.uk
JHD Family Weekend
Our family weekend gives families living with Juvenile Huntington’s disease the chance to create lasting memories and meet others in a similar situation. Below is a video about the weekends or you can find out more on our JHD events page.
Help us to help families affected by JHD
Help us support families living with Juvenile Huntington’s disease – make a donation today.