HDYO's Top Tips: Talking to children about HDPPUsing 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...What is HD?TYFPHuntington's disease is a genetic disorder which is caused by an expanded gene in a person's DNA. Everybody has the gene that causes Huntington's disease, but people that develop the condition have a longer version of the gene. It is that expansion which causes the gene not to work properly and eventually causes people to develop the condition. Huntington’s disease is also a ‘neurodegenerative disorder’. But what does neurodegenerative disorder actually mean?! Well, if you break it down, neuro means ‘nerve’ and degenerative means something that gradually gets worse. Disorder is another word...Find out more...Talking to kids about HDPPInformation 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 Dr Bonnie Hennig-Trestman.Reasons for talking to kids about Huntington's
Who should tell the kids
When should I tell the kids
How should I tell...Find out more...Conversation startersPPTalking 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...Genetic TestingTYFPIn 1993, scientists discovered exactly where the gene which causes Huntington's disease is located in our DNA and figured out what it was doing. Because of this people are now able to have what is called a 'predictive test'. It is known as a predictive test because the test can be taken by people at risk of Huntington's disease who currently show no symptoms and want to learn whether they will develop the condition in the future. The result of this test will usually be able to tell a person whether they have the expanded gene or not. It is important to note that if a person already has...Find out more...HDYO LandKTPPAre 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...Potential outcomes of not discussing HDPPUsing 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...Having childrenYFP Knowing that you are at risk of Huntington's disease may have an impact on whether you decide to have children or not. The decision to have children is a very personal choice between you and your partner. This section looks at some of the options available with regards to having children.The genetic risk to childrenThe risk of passing on Huntington's disease is usually the main concern when people at risk are thinking of having children. A lot depends on whether the person wanting children knows their gene status or not. Some people decide to test before they have children in order to find...Find out more...The Basics of JHDJPThis 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...Living in a family with JHDJPThis 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...Being at riskTYFPBeing at risk of Huntington's disease can have a big impact on a young person's life. This section will aim to cover the worries experienced by young people with regards to being at risk, whilst providing advice and support on how to overcome these worries. But first, let's look into the science of being at risk.What does being 'at risk' mean? Being 'at risk' basically means that a person has a chance of inheriting the condition from their affected parent. This is because Huntington's disease is a genetic condition, so anyone who has a parent with Huntington's disease is at risk of...Find out more...Living in a family with HDTYPFP 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...Being a young carerTYFP As people with Huntington's disease progress, a person affected with the disease will gradually begin to need more care. As a result, young people in a family with Huntington's disease may provide care for a loved one at some point in their lives. Many young people find themselves taking on a caring role in a family with Huntington's disease. However, becoming a carer does not generally happen overnight, it is usually something that happens gradually. Many young people may not see themselves as a carer or will provide care to their loved one without realising it. You may be providing care...Find out more...RelationshipsTYFPRelationships can play an important role in coping with Huntington’s disease. Having the support of a partner or close friends can be very helpful, often providing a much needed shoulder to lean on. Sometimes getting involved and progressing in relationships can be a difficult process for those in a family affected by Huntington’s disease. WorryYoung people with Huntington’s disease in the family may have a lot of worries about forming relationships, especially with a potential partner. They may worry about if they will develop the illness, about having children or getting married. People...Find out more...Visiting a care homeTYPAs Huntington's disease progresses, people tend to need more care. This can be an incredibly difficult task for someone to undertake, as the kind of care needed can become an exhausting 24 hours a day, 7 days a week job. This is why many people with Huntington's disease eventually live in a care home, a place where they can receive care around the clock and have their needs met by professionals. This section highlights some of the emotional difficulties experienced by young people who have a parent with Huntington's disease in a care home, and some tips on how to make the most out of this...Find out more...Resources for JHDJP
Below you will find a list of resources for families with JHD. You should also look at the links section.
Find out more...Feeling embarrassedTYPWhen someone close to you has an illness it can sometimes put you in situations that may cause you to feel embarrassed or ashamed. With Huntington's disease in particular, the involuntary movements and behavioural symptoms caused by the condition can create various embarrassing situations - ones which can draw unwanted attention and be awkward to explain or understand.Firstly, let's make this very clear, it is perfectly ok for a young person to feel embarrassed due to the actions of someone with Huntington's disease. In fact, if this person is close to you, it is a very normal feeling to...Find out more...CoronavirusEveryoneCoronavirus disease (also called COVID-19) is an infectious disease caused by a newly discovered virus that is spreading rapidly around the world. It was declared a pandemic on 11 March 2020 by the World Health Organisation and many countries are putting strict measures in place to reduce the chance of high risk people being exposed to it and to delay the spread of the disease. That can include people with symptomatic Huntington’s disease - but mainly in the later stages.Reliable informationHere are some links to trusted information. There are a lot of rumors and false information being...Find out more...