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As a parent who was the primary caregiver for my daughter with Juvenile Huntington's Disease, Kelly Elizabeth Miller,
I felt there was an urgent need to create a website to help other families locate information or resources JHD. You
can read about how Kelly and I dealt with living with JHD in several different articles under the Bio section. |
Juvenile
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Parents with children at-risk for Huntington's Disease are, naturally, very concerned their
child may be showing early symptoms of the disease. Information on this site is either directly about Juvenile Huntington's
Disease, or other information which will [hopefully] be helpful to families who have a child with JHD or are concerned
about their child having JHD. You'll find a couple of excellent guidebooks on JHD from both the Huntington's Disease
Society of America (HDSA) and the Huntington Society of Canada (HSC) , for those with a child who has Juvenile HD.
Your child may be having difficulties with behavior at home or at school which concerns
you. It is helpful to not only know the symptoms of Juvenile HD but to also recognize that the stress of living
in a family with HD can also cause behavior problems in a child (along with peer pressures at school etc.) If you are
seeing changes in your child which you feel is impacting their ability to function in school or at home, or is causing
them harm in any way, please discuss these with your child's primary care physician as soon as possible. Be honest with the
physician about your child's at-risk status, but make sure all other testing is done first to rule out any other causes such
as depression, ADD, AD/HD etc.
It is hoped the articles here will be useful in helping you understand about Juvenile
Huntington's Disease, the management of the symptoms, the procedures and medications ordered by your child's physician, etc.
And...remember, you're child also has a 50% chance of NOT getting Huntington's Disease!!
There is a lot of information helpful to children and young adults living with Huntington's
Disease. They deal with a lot of the same situations their parents do, but from a kids perspective. However it
was too much stuff to put on this site, so it's been moved to Speaking Out ~ Living With HD . That site is a very moving and touching portrayal
of how the devastation of Huntington's Disease affects the lives of our young children and adults living with the disease.
If you have any additional information or resources on Juvenile Huntington's Disease, please
either send me an email or make an entry in the Guestbook so that I may include it here. For parents wishing to communicate with each other as support or seeking information,
please use the Parent-To-Parent Forum
Thank you
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Disclaimer
This site is a non-profit effort to help families
living with Huntington's Disease who
has a child at risk for
the disease or has the Juvenile form of the disease. It
is not owned or sponsored by any
company, corporation or organization.
Although the site includes links providing
direct access to other Internet sites, the Webmaster takes no responsibility for
the content or information contained on those sites, and does not exert any editorial or
other control over those sites. If anything
on this site violates any copyright or other protected data it was done so unintentionally. Please contact
the webmaster to have that information removed. |
The
information offered on this site is by a non-medical professional. Information
is provided to
assist you in finding information
only. If
you have specific
medical questions about
your condition and/or its
treatment please consult with
your medical professionals.
Inclusion
of information on this site does not constitute an endorsement or recommendation the webmaster.This site does not receive any source of funding to support it. All work is done voluntarily by the webmaster. Advertisement at the top of the page is by the web provider.
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