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Art friends 1Top tips for friends of young people impacted by HDF2727 people shared this0 commentsDoes your friend come from a family with HD? Do you want to learn how to be supportive and understanding for your friend with regards to HD? Don’t worry, we’ve got you covered! Check out these top tips for friends of young people impacted by HD.Tip #1: Understanding how brave your friend is First, you are probably here because your friend has recently told you that their family has HD. Without knowing much (or anything about HD) it’s easy to underestimate just how brave it is of your friend to share this information with you. HD is a serious condition and if your friend has taken the...Find out more...
Ask question 3Ask a questionKTYJF00 people shared this0 commentsquestionsFind out more...
Art partners 1Being a partner to a young person impacted by HDF2929 people shared this0 commentsWhat’s it like to be a partner to a young person impacted by Huntington’s disease (HD)? What challenges do you face as a partner? How can you help your partner on their journey with the impact of HD? These are some of the questions we will aim to explore in this section. HD is a condition which can impact significantly on the whole family. A person stepping into the partner role with someone in a family affected by HD will have to be understanding and supportive. We’ll start where a relationship usually starts… at the beginning. Beginning a new relationship with a young person impacted by...Find out more...
Art mad scientistWhat is HD?TYFP89808980 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?TYF44894489 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 cag repGenetic TestingTYFP75507550 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 childrenYFP41454145 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 HDTYPFP66946694 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 riskTYFP67706770 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 carerTYFP99559955 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 togetherRelationshipsTYFP37263726 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...