Huntington's Disease Youth Organization

Living in a family with HD The people most affected by Huntington's disease are those that have the condition (obviously). What is not quite as obvious is how the disease impacts hugely on those around the person with...Find out more...
Telling the childrenResearchers want to hear about the challenges and support needs of parents looking to tell their children about HD. Can you help with this study?Find out more...
Talking about JHD with children and young peopleTalking 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...Find out more...
Young peoples' experiences of finding out about HDIt is important that, as well as getting the parents' experiences of talking to kids about Huntington's disease, we hear the views and opinions of young people who have been told about the disease...Find out more...

HDYO LandKTPP12101210 people shared this0 commentsAre you ready to explore HDYO Land? HDYO Land is an interactive, colourful and fun program aimed to help children learn about Huntington’s disease (HD). In HDYO Land you will be able to visit and explore 5 different areas in which you will meet some wonderful characters who will take you on an adventure through many locations, educating you about HD along the way!In each area of HDYO Land you will learn the basics about different subjects such as:What is HD? How do people get HD? How does HD affect people? Living in a family with HD History of HD Each area is made up of fun characters,...Find out more...

Living in a family with HDTYPFP1535415354 people shared this0 comments The people most affected by Huntington's disease are those that have the condition (obviously). What is not quite as obvious is how the disease impacts hugely on those around the person with Huntington's disease. This section focuses on some of the issues which young people may experience when living or growing up in a family with Huntington's disease. It doesn't cover issues regarding Being At Risk (which can seem quite similar). First finding out about Huntington's diseaseHuntington's disease comes into people's lives at many different ages. Some people may find out about Huntington's...Find out more...

Talking about JHD with children and young peoplePJ305305 people shared this0 commentsTalking 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...

Young peoples' experiences of finding out about HDTYP40834083 people shared this0 commentsIt is important that, as well as getting the parents' experiences of talking to kids about Huntington's disease, we hear the views and opinions of young people who have been told about the disease by their parent/guardians. This will enable us to hear both sides of this difficult topic and gain a better understanding of different approaches and strategies when it comes to talking to children about Huntington's disease. If you are a young person who has been told about Huntington's disease by a parent or guardian, why not fill in the form below, we will add it to the site once it has been...Find out more...

HDYO's Top Tips: Talking to children about HDPP97909790 people shared this0 commentsUsing various sources, research studies, and professional advice, HDYO has put together a list of key points for parents/guardians to remember when talking to children about Huntington's disease.Tell all the children at the same time if possibleIt can be tempting, if you have children with varying differences in age, to tell each child about Huntington's disease on different occasions, rather than at the same time. However, it's important to initially tell all the children at the same time about Huntington's disease in a simple manner. Then, afterwards you can discuss it with each age group...Find out more...

Talking to kids about HDPP1107511075 people shared this0 commentsInformation and techniques used to talk with children about Huntington's disease. Including advice from licensed social workers with a background in Huntington's, along with testimonials from children and parents. HDYO believes in the importance of talking to children, about Huntington's disease, in a safe and appropriate manner. We have put together this section by ways of talking to many young people, their parents and a special thankful help to Bonnie L. Hennig, MSW, LCSW - Clinical Therapist.Reasons for talking to kids about Huntington's Who should tell the kids When should I tell the...Find out more...

Conversation startersPP30903090 people shared this0 commentsTalking about HD with Young PeopleTalking with children about Huntington’s disease (HD) can be difficult. What do you say? Where to start? How to approach the topic? How much information to provide? There are plenty of questions to think about before you go ahead and discuss this information with children. Other sections on this website provide great advice on talking with children. However, this section focuses on some examples of conversation starters with children of different ages, as well as some questions children may ask in response to this discussion about HD. You may find some of...Find out more...

Parents' experiences of talking to kids about HDP43734373 people shared this0 commentsIn this section you will find the experiences of parents who have talked to their children about Huntington's disease. These experiences are here to provide real-life insight into talking to kids about Huntington's disease from those that have been through it themselves. As well learning from other's experiences in this section, you can also provide your own experience by filling in the form below. All content will be checked by HDYO before being added to the site and we request that you provide a name along with your location and your experiences.Send us your experience of...Find out more...

Potential outcomes of not discussing HDPP51855185 people shared this0 commentsUsing material from various sources including research studies, professional advice and young people's experiences, HDYO has produced a list of issues that could potentially arise when Huntington's disease is not discussed with children.Filling in the gaps: using imaginationIf a child is aware that someone has changed/is different and they are not given factual information on why this person has changed, then they will use their imagination to fill in the gaps in their knowledge. This tends to lead to the child making incorrect assumptions that are often worse than the facts - which can...Find out more...