Ask a QuestionKTYJFNovember 11, 2021/contactFind out more...
HDYO LandKPPNovember 12, 2021Are 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...
Talking to Kids About HDPNovember 23, 2021Information 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 for the material from her book Talking to Kids About Huntington's Disease.Reasons for talking to kids about...Find out more...
HDYO's Top Tips: Talking to Children About HDPPNovember 24, 2021Using 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...
The Basics of JHDJPJanuary 16, 2022This section explains the basics of Juvenile-onset Huntington’s disease (JoHD) and provides some insight into the kind of support available for families impacted by JoHD.What is JoHD?When George Huntington first identified Huntington’s Disease (HD) in 1872, he suggested that the disease affects adults only. It is now known that HD can occur in individuals at any age - young or old. When someone develops symptoms of HD before the age of 20, they are classed as having JoHD. They will be classed as having JoHD no matter what their current age is. When someone with JoHD is currently under the...Find out more...
Top Tips for Friends Of Young People Impacted by HDFNovember 24, 2021Does 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 isFirst, 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...
What is Huntington's Disease?TYFPJanuary 16, 2022Huntington’s Disease (HD) is known as a rare ‘genetic neurodegenerative disorder’. The word genetic means that this disease is passed down from one generation to the next. Neuro relates to the brain. Degenerative means something that gradually gets worse over time. Disorder is another word for disease. So, when people describe HD, they are saying it is a disease passed down from a parent to a child, which affects the brain, and gradually gets worse over time. HD is caused by a spelling mistake (called a mutation) in the letters of DNA within the huntingtin gene. The huntingtin gene is the...Find out more...
Being a Partner to a Young Person Impacted by HDFNovember 24, 2021What’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...
Being at RiskTYFNovember 24, 2021Being 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...
Conversation StartersPNovember 22, 2021Talking 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...
HDYO HeroesKNovember 22, 2021Want to help spread awareness of HD?Join the HDYO Heroes Program We invite you to join the HDYO Heroes Program and contribute your time, energy or creativity in a way that works for you to help spread awareness of HD! Below you will find different Hero Challenges to complete. If you finish all the missions for a particular challenge then you will receive a HDYO gift along with a certificate as a reward and to recognize your efforts! You can track your progress below and once you complete a challenge you can request your rewards!There’s a special reward for anybody who manages to complete...Find out more...
The Difficulty in Diagnosing Juvenile HDJNovember 23, 2021Juvenile HD (JHD) can be a very challenging condition for a family and person to deal with. Even getting a diagnosis of JHD has its own challenges and frustrations for families and doctors alike, which can cause lengthy delays in a diagnosis. This section takes a look at the challenges in diagnosing JHD.Why does diagnosing JHD take so long?In one recent study the average time it took to diagnose children with JHD was an incredible 9 years! That’s a (really) long time! So why does it take so long and what happens during this time? If the doctor is seeing a child for the first time, they...Find out more...Coloring PagesKDecember 31, 2015Colouring pages from HDYO Land!Welcome! Here you will find lots of colouring in pages for you to enjoy, all taken from HDYO Land – have you been to HDYO Land yet?! It’s a pretty cool place to explore. Now you can colour in your favourite characters! Simply click on the one you want to colour in, print it out and get your colouring crayons/pens/paints ready! Have fun!HDYO’s LabAlbert and Bella in the lab Albert, Bella and the cheeky mouse! HDYO’s RestaurantChef Antonio and Albert outside the HDYO Restaurant Chef Antonio and Bella inside the HDYO Restaurant Chef Antonio avoiding a sneeze Chef...Find out more...
Genetic TestingTYFNovember 24, 2021In 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...
Potential Outcomes of Not Discussing HDPNovember 24, 2021Using 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...
Talking About JHD with Children and Young PeoplePJNovember 23, 2021Talking to a child about a medical condition, especially a genetic one is difficult. It is even more difficult when that condition affects them. This section will explore ways to talk to children about Juvenile HD (JHD). It will include the challenges they might face, how to talk about JHD, and, how to explain what is happening to them or their sibling.Things to think about when talking about JHD with your children We at HDYO encourage families to talk openly about HD from a young age. We know research shows talking openly to children of all ages helps them to cope better. We suggest a...Find out more...
Having ChildrenYFNovember 26, 2021 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...
Living in a Family with HDTYPFPNovember 24, 2021 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...Living in a Family with JHDJPNovember 24, 2021This 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...
Top Tips for Helping a Person with HD - for KidsKFebruary 27, 2018Written by Michaela Crutsinger, OTDSEdited by K. M. Knewstep-Watkins, OTD, OTR/LThis section is here to help children look after their family member who has HD by offering some tips on caring. These tips are split into different topics and stages of HD (early, mid and late stage). We hope you find this section helpful. Early StageEating & Meals During the mealtime, you may notice your family member with HD having some new difficulties. Here are some things that can be helpful during mealtimes for a person with HD.Forks and spoons with bigger handles can help a person eat with less spilling....Find out more...The Invisible SiblingsJNovember 23, 2021This article is very much inspired by a blog I read recently from a mother with a child who has special needs and another child which does not. She wrote very honestly and emotionally about the fact she struggles to spend time with her other child and as a result that child becomes the ‘invisible sibling’. The blog was sent to me by a mother in a family with JHD, she thought it was very relevant to her situation and the situation that many JHD families find themselves in. So, here we will explore the issue of ‘invisible siblings’ within JHD families.What’s happening to make children in...Find out more...
RelationshipsTYFNovember 24, 2021Relationships 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...
Resources for JHDJNovember 24, 2021Below you will find a list of resources for families with JHD. You should also look at the links section.
Find out more...
Things to Consider When Adopting a Child at Risk of HDPNovember 21, 2021 For those considering adopting a child who could be at risk for Huntington’s Disease there are some key things that you should take into account to help shape your decisions. Adoption is a long and difficult process for anyone to embark on like all aspects of building a family unit. If Huntington’s Disease is a factor in the life of a child you are adopting then we have put together a simple factsheet to help shape the research you should do to help make an informed decision and to help you support your child as they grow up.Adopting a child who is at risk of HD is a serious decision for...Find out more...
Visiting a Care Home: Things You Can Do to HelpKNovember 01, 2011Do you have a family member who is in a care home? Do you go to visit them sometimes? If so, then take a look at our list of things to do with a loved one in a care home. Maybe you can think of some things to add to it too!Care home visit: A list of ways to have fun and help Bring pictures to show them. Perhaps of a recent trip you went on or school event you participated in!
Show them your new toys!
Maybe you could take a drawing in to show them? You could tell them all about it.
Bring gifts for the person. What do they like? Maybe you could ask someone in the family what the person...Find out more...
Sheenam’s Wish (currently UK only)JNovember 22, 2016 This is a touching story about a young woman impacted by Juvenile Huntington’s Disease (JHD) who has created an opportunity for JHD families to receive some respite from the challenges of JHD and have a bit of fun.What is Sheenam’s Wish?Sheenam’s Wish is a charity set up in 2011 to provide small £100 grants to children and families that are impacted by JHD in the UK. These grants are to be used specifically for the children and the family enjoy themselves and have fun. How did Sheenam’s Wish get started?Sheenam’s Wish was started by an inspirational young woman called Sheenam, who has JHD...Find out more...Talking About HD with Family and FriendsTYNovember 23, 2021Talking 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...The HD Gene: Under the MicroscopeTYNovember 22, 2021Huntington'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...
How Does HD Affect People?TYFNovember 24, 2021If 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...
Being a Young CarerTYNovember 24, 2021 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...CopingTYNovember 23, 2021As 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...Dealing with a DiagnosisYJanuary 31, 2018Note: To clarify, when we say ‘diagnosed with HD’ we mean having symptoms. We are not referring to testing positive or negative. If you are looking for content on that topic we suggest visiting the genetic testing section. Making the decision to be tested for the HD gene can be a very challenging experience. For some people who are positive but asymptomatic (not showing any signs of HD) this can be both a comfort and anxiety provoking. Many people who are positive for HD worry each time they forget a person's name, drop a fork, or have a short temper. They fear these are symptoms of HD. So...Find out more...
What Does It Feel Like to Have HD?TYNovember 22, 2021Ever 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...
BullyingTYJuly 28, 2020This section is going to look at how bullying can impact on young people in HD families. Bullying is a behaviour which is intended to hurt someone either emotionally or physically and is often aimed at certain people because of their race, religion, gender or sexual orientation or any other aspect such as appearance or disability. It can happen in many forms and places. In this case, we are exploring when bullying happens because you have HD in your family. The impact of bullying Whatever type of bullying you are receiving, whether it be physical, name calling, social or cyber bullying,...Find out more...Emotional WellbeingTYNovember 23, 2021Emotional 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...
Visiting a Care HomeTYNovember 23, 2021As 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 You Can Do for Someone with HDKTNovember 24, 2021Ever 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.
Create or do a puzzle the two of you can do together
Play a game with the person with Huntington's disease. Do you have one that you both like?
Go out for a walk with them, maybe around the local park or a...Find out more...
Loss & BereavementTYNovember 24, 2021'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...
Planning for End of LifeYDecember 23, 2019No one likes to think about planning for long term care or end of life decisions. But the more control you have when you are able to make these decisions the better and easier it can be to cope with HD in the future. This section aims to give you some options to consider when thinking about planning for the future. Since HDYO is a global organisation we can’t be specific to the choices each person has in every country. We do however hope this information will be helpful to you. Although an attorney is not always needed for these options, HDYO suggests consulting experts, such as attorneys...Find out more...
Top Tips for Helping a Person with HD - for TeensTNovember 23, 2021Written by Michaela Crutsinger, OTDSEdited by K. M. Knewstep-Watkins, OTD, OTR/LThis section is here to help teenagers look after their family member who has HD by offering some tips on caring. These tips are split into different topics and stages of HD (early, mid and late stage). We hope you find this section helpful. Early StageEating and Meals A family member with new symptoms of HD may have some difficulties while making and eating meals. Some difficulty can be from their difficulty making smooth movements and other difficulties are related to new, small challenges with certain...Find out more...
Feeling EmbarrassedTYNovember 24, 2021When 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...
Genetic Testing ChecklistYNovember 24, 2021The purpose of the checklist is to provide any individual thinking, actively engaged in or having been engaged in the testing process a framework of things to think about at various stages of the process. The checklist is to be used as a guide and no one should feel forced to ask any of the questions – it is simply a resource to empower the individual during the process. You may wish to use the checklist to think about questions you want to discuss with a genetic counsellor.Prior to Starting the ProcessWhat is my motivation for testing?Is this the right time in my life?Testing is a major...Find out more...
History of HDTYNovember 22, 2021This section is going to explore the history of Huntington’s disease from the very beginning to the modern day, using as much as we know from research conducted around the world. Origins of HDWhere else to start than the origins of HD. When did HD start? HD has been around for a long time. It is a genetic condition and we now know that one gene is responsible for people getting HD (we will talk about how this gene was found later). That gene is in every single human being, only most people have a ‘normal’ version of this gene and some, unfortunately, have an expanded version which causes...Find out more...
Top Tips for Helping a Person with HDYNovember 24, 2021Written by Michaela Crutsinger, OTDSEdited by K. M. Knewstep-Watkins, OTD, OTR/LThis section is here to help young adults look after their family member who has HD by offering some tips on caring. These tips are split into different topics and stages of HD (early, mid and late stage). We hope you find this section helpful. Early StageEating and MealsA family member with new symptoms of HD may have some difficulties while making and eating meals. Mealtime difficulties are often due to new issues with either motor control and/or cognition. HD can cause difficulties such as spilling food and...Find out more...
Know Your RightsYJune 07, 2016Knowing 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...