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Art mad scientistWhat is HD?TYFP91279127 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 sudoku failHow does HD affect people?TYF46044604 people shared this0 commentsIf you have read the 'What is Huntington's disease?' section, you will know that the symptoms experienced by people with Huntington's disease can be divided into three main types: involuntary movements, cognitive problems and behavioural symptoms. This section will look into what type of symptoms fall under these three categories and how they affect a person with Huntington's disease.Before we start it is really important to realise that a person with Huntington's disease may not develop ALL the symptoms mentioned in this section. Most people only get some, and each individual experiences...Find out more...
Art chromo dna geneThe HD Gene: Under the microscopeTY32563256 people shared this0 commentsHuntington's disease is caused by an expansion in one specific gene, in a person's DNA. This article explores the gene in question and takes a look at this 'expansion'. We will also use family trees to show how the gene is inherited and passed on.Genes, Chromosomes and DNA First, let's go over some basics, starting with DNA. DNA is the name of the chemical that our genes are made from. The letters 'DNA' stand for Deoxyribonucleic Acid (catchy, isn't it?). Not surprisingly, nobody really uses the full name - DNA is a lot easier to say and remember.DNA is what we inherit from our parents,...Find out more...
Art cag repGenetic TestingTYFP76637663 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 childrenYFP42484248 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 family photoLiving in a family with HDTYPFP67926792 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 riskTYFP69056905 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 carerTYFP1009210092 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...
Talking about HD with family and friendsTY715715 people shared this0 commentsTalking seems like such an easy thing to do. We talk to people every day (well, most of us do) and experience very little difficulty in speaking about a whole range of topics. However, talking about Huntington’s disease (HD) to our family and friends is something many of us seem to really struggle to do. There are reasons for why we find talking about HD challenging, which we shall explore in this section! But first, let’s think about why we should even bother talking about HD.Why should we talk about HD?Many young people may wonder why they should talk about HD at all. It’s not an easy...Find out more...
Art couple walking togetherRelationshipsTYFP38443844 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 homeTYP51045104 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...
Art shutter blindfoldWhat does it feel like to have HD?TY40434043 people shared this0 commentsEver wondered what it might feel like to have Huntington's disease? This section is going to use a series of interactive exercises and games to provide you with an insight into the mind of a person who has Huntington's disease, and help you see the world through their eyes. HDYO would like to take the time to thank James Pollard for all his help with this section. When a person has Huntington's disease many things are affected and, as a result, tasks become more difficult. To help us understand these changes and just how difficult tasks become for people, we are going to go through some of...Find out more...
CopingTY1414 people shared this0 commentsAs a young person in a family with HD, coping is perhaps the most important thing to achieve as it can impact so heavily on your ability to accomplish your personal goals in life. But it’s not always easy to cope. This section will explore the challenges to coping with HD as a young person and offer experience on how to cope.What is coping?First, what are we talking about? What does coping mean? Well, it means to deal with something in your life. In this case we are talking about the impact of HD in your life and how you handle that. That is coping. Coping is generally thought to suggest...Find out more...
Art shutter adoption fosteringYoung peoples' experiences of finding out about HDTYP17491749 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...
Art look of doomFeeling embarrassedTYP28642864 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 supportive friendsEmotional WellbeingTY19061906 people shared this0 commentsEmotional Wellbeing is a term that can mean different things to different people, but for this section we mean it as how you feel emotionally and your self-esteem. Emotional wellbeing is really important because feeling well emotionally can help you cope, but when you are less well emotionally it can be harder to cope, especially when times are tough. As a young person, having HD impact your life can sometimes affect how you feel about yourself. There are many ways that HD can emotionally impact on a young person and this section will focus on the most common of those. It is important to...Find out more...
Art bedsideLoss & BereavementTY10531053 people shared this0 comments'Loss' is when you lose someone or something that means a lot to you, and 'bereavement' is the process of how you feel about losing someone or something close to you. Loss and bereavement is something that many young people impacted by HD experience at some point. HD is a progressive condition and so people with the condition will eventually die. Everyone passes away at some point. The difference for people from HD families is that they might have to deal with the loss and bereavement at an earlier age than most people. LossThe slow progression of HD in someone you love or care for can be...Find out more...
Section tex 17Know Your RightsTY9393 people shared this0 commentsKnowing your rights may seem a bit dull for some people, but it’s actually really important to know and be confident about what human rights you have and what you should expect from those people around you. This section looks at your rights in relation to HD. The United Nations is an international organization founded to encourage global cooperation between countries, they also work to create human rights and encourage countries to have a good level of human rights for people in that country. One of the rights the UN have created is called the UN Convention on the Rights of the Child (UNCRC...Find out more...