Huntington's Disease Youth Organization

What is HD?Huntington'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...Find out more...
Being at riskBeing 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...Find out more...
Ask a questionHave a question about HD? Get it answered here by HD experts from around the worldFind out more...
The HD Gene: Under the microscopeHuntington'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...Find out more...

Ask a questionKTYJ4 months ago0 people shared this0 commentsquestionsFind out more...

What is HD?TYPabout 1 month ago34 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', which means the condition affects the cells of our brains and causes damage over time. This stops the brain and body from working as well as they used to. As a result, people develop...Find out more...

How does HD affect people?TY4 months ago20 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...

The HD Gene: Under the microscopeTY3 months ago21 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...

Genetic TestingTYP3 months ago34 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...

Living in a family with HDTYP4 months ago28 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...

Being at riskTYP3 months ago29 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...

Being a young carerTYP3 months ago29 people shared this0 commentsAs 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...

RelationshipsTYP7 months ago19 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...

Visiting a care homeTYP6 months ago18 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...

What does it feel like to have HD?TY5 months ago23 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...

What you can do for someone with HDKT5 months ago12 people shared this0 commentsEver wondered how you can do more to help someone with Huntington's disease? Here's a list of simple things that may make a big difference. Maybe go to a sporting event together, or to a show that you all like. Make a big fuss over their birthday! Get them a special present. Draw a picture and show the person with Huntington's disease Write a poem for them, or to show how you feel. Look in the creative expression section for poems from other young people! Maybe you could put your poem in there too? Create or do a puzzle the two of you can do together Play a game with the person with...Find out more...

Young peoples' experiences of finding out about HDTYP3 months ago33 people shared this0 commentsIt is important that, as well as getting the parents' experiences of talking to kids about Huntington's disease, we will add it to the site once it has been checked by HDYO, and parents/guardians will be able to view this section to learn from the various experiences posted below in order to shape their own thoughts on how best to talk to children about the topic.Include your name, location and experience of being told about Huntington's disease.FelicityMy name is Felicity, and I am eleven years old. In 2008, I found out that my Nan had Huntington's disease. I had just turned ten, when my...Find out more...

Feeling embarrassedTYP7 months ago31 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...

Creative ExpressionKT7 months ago0 people shared this0 commentscreativeFind out more...