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The Basics of JHDJPNovember 22, 2021This section is here to explain the basics of Juvenile Huntington's disease (JHD). As well as provide some insight into the kind of support available for families impacted by JHD. What is JHD?When George Huntington first identified Huntington disease in 1872, he suggested that the disease affects adults only. It is now known that Huntington disease can occur in individuals at any age in their life - young or old. When someone who is 20 or younger develops symptoms of Huntington's disease, they are classed as having Juvenile Huntington's disease (JHD). So effectively 'JHD' means a young...Find out more...
The Difficulty in Diagnosing Juvenile HDJNovember 23, 2021Juvenile HD (JHD) can be a very challenging condition for a family and person to deal with. Even getting a diagnosis of JHD has its own challenges and frustrations for families and doctors alike, which can cause lengthy delays in a diagnosis. This section takes a look at the challenges in diagnosing JHD.Why does diagnosing JHD take so long?In one recent study the average time it took to diagnose children with JHD was an incredible 9 years! That’s a (really) long time! So why does it take so long and what happens during this time? If the doctor is seeing a child for the first time, they...Find out more...
Talking About JHD with Children and Young PeoplePJNovember 23, 2021Talking to a child about a medical condition, especially a genetic one is difficult. It is even more difficult when that condition affects them. This section will explore ways to talk to children about Juvenile HD (JHD). It will include the challenges they might face, how to talk about JHD, and, how to explain what is happening to them or their sibling.Things to think about when talking about JHD with your children We at HDYO encourage families to talk openly about HD from a young age. We know research shows talking openly to children of all ages helps them to cope better. We suggest a...Find out more...
Living in a Family with JHDJPNovember 24, 2021This section is specifically for young people living in a family with Juvenile Huntington's Disease (JHD), who don't have JHD themselves. As we take a look at some of the concerns young people growing up around JHD may have.An early introduction to Huntington's...Often, in a family with JHD, the introduction to the disease for young people happens at a very young age. Children essentially 'grow up' with the disease as a part of their life. Usually young people have to watch their sibling(s) progress with JHD, which can be very difficult to cope with. However, as a result of having the...Find out more...
The Invisible SiblingsJNovember 23, 2021This article is very much inspired by a blog I read recently from a mother with a child who has special needs and another child which does not. She wrote very honestly and emotionally about the fact she struggles to spend time with her other child and as a result that child becomes the ‘invisible sibling’. The blog was sent to me by a mother in a family with JHD, she thought it was very relevant to her situation and the situation that many JHD families find themselves in. So, here we will explore the issue of ‘invisible siblings’ within JHD families.What’s happening to make children in...Find out more...
Resources for JHDJNovember 24, 2021Below you will find a list of resources for families with JHD. You should also look at the links section.
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Sheenam’s Wish (currently UK only)JNovember 22, 2016 This is a touching story about a young woman impacted by Juvenile Huntington’s Disease (JHD) who has created an opportunity for JHD families to receive some respite from the challenges of JHD and have a bit of fun.What is Sheenam’s Wish?Sheenam’s Wish is a charity set up in 2011 to provide small £100 grants to children and families that are impacted by JHD in the UK. These grants are to be used specifically for the children and the family enjoy themselves and have fun. How did Sheenam’s Wish get started?Sheenam’s Wish was started by an inspirational young woman called Sheenam, who has JHD...Find out more...