Select your wallpaper: Select your wallpaper: Select your wallpaper: Sign up to save your choice Close
Forum Store
Art-mad-scientistWhat is HD?TYP5 months ago402402 people shared this0 commentsHuntington'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...
Art-cag-repGenetic TestingTYP3 months ago324324 people shared this0 commentsIn 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...
Art-shutter-egg-embryo-donationHaving childrenYP3 months ago241241 people shared this0 comments 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...
Art-90-hd-10-jhd-chartThe Basics of JHDJPover 1 year ago5959 people shared this0 commentsThis 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...
Art-spotlightLiving in a family with JHDJPover 1 year ago5050 people shared this0 commentsThis 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...
Art-family-photoLiving in a family with HDTYPover 1 year ago246246 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...
Art-same-hair-as-meBeing at riskTYP10 months ago304304 people shared this0 commentsBeing 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...
Art-swapping-rolesBeing a young carerTYP3 months ago276276 people shared this0 comments 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...
Art-couple-walking-togetherRelationshipsTYPover 1 year ago255255 people shared this0 commentsRelationships 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...
Art-child-hugging-parentVisiting a care homeTYPover 1 year ago223223 people shared this0 commentsAs 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 JHDJPover 1 year ago6464 people shared this0 comments

Below you will find a list of resources for families with JHD. You should also look at the links section.

Find out more...
Art-discussion-during-basketballHDYO's Top Tips: Talking to children about HDPP3 months ago105105 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...
Art-look-of-doomFeeling embarrassedTYPover 1 year ago150150 people shared this0 commentsWhen 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...
Art-family-talking-round-tableTalking to kids about HDPP3 months ago136136 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...
Art-shutter-child-1Potential outcomes of not discussing HDPPover 1 year ago129129 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...