HDYO has more information about HD available for young people, parents and professionals on our site:
HDYO's mission is to support young people affected by Huntington's disease all over the world. In order to provide support, HDYO produces a huge amount of informative and educational content for young people and their families affected by Huntington's disease. All of this content has to be translated into as many languages as possible to ensure that young people have access to the information that may help them live positively despite Huntington's disease being in their lives. You can see how much progress we have made towards translating HDYO's content on our statistics page. The translations for HDYO are done by the HDYO Translator Team, which consists of many people who share a desire to help. Many of them are in fact young people affected by Huntington's disease themselves, who want to do their part for the cause. All HDYO's translators are volunteers, giving up their time freely. HDYO is always looking for more translators. If you feel you have the ability to translate for HDYO and would like to do so, then contact HDYO and let us know. Who knows, maybe you could join the team you see below!
Marthe: I'm 21 years old and live in Trondheim where I study to be a pre-school teacher. I grew up with HD in my family. For the last couple of years I have wanted to do something for the HD community, by translating for HDYO I feel like I'm giving something back for those who need it, and at the same time it is helping me through my own coping process.
I'm 36 years old and live in Stuttgart, Germany. I grew up in a Huntington's disease family. I learned about Huntington's disease at the age of 15. My Dad died of Huntington's 9 years ago. Huntington's disease was always part of my life. I know the fears of those at risk and their sorrows but also their strength and ways of fulfilling their lives with joy. Translating is not a big effort for me and the results are very valuable. It's an extremely good feeling doing something for young people in Huntington's disease families.
My Dad suffers from Huntington's disease. Taking care of him is difficult but gives me a lot of satisfaction at the same time. I feel that I must help others because all of us need support (and yes, this is the way to help myself too). Cooperating with HDYO is the best way of doing it. Besides I feel that it's only when we do things together we can really help the Huntington's disease community. HDYO is such a great idea. Together we're creating a completely new reality. I know that because I can see a difference. It's unbelievable how much we are able to do! For those whom we love and for ourselves. It makes me so happy! This work and satisfaction it brings are worth our every effort :)
My connection to Huntington's is through my mother, who's at this point at a late stage of Huntington's disease. She started showing symptoms very early, and after my parents got separated when I was 9 years old, the disease progressed very fast. My older brother, younger sister and I, didn't understand what was going on with mom until about 4 years later, when our dad told us about Huntington's disease. But even after mom got her diagnosis she kept denying it and refused to get help. So my siblings and I took care of her all through our teenage years, some of us more than others. We felt like we were alone in the world until my sister and I started up a youth support group in Gothenburg with a few others and got a chance to hear others stories and share ours with others who for once understood.
I got that support through other young people and I believe it's the best support you can get, after knowing each other for five minutes you feel like you've known each other for years. That's why I really believe in the HDYO, it's a great way to reach young people and give them the opportunity to meet with others who will understand and support them. I've wanted to reach and help other young people for quite some time, and I never really knew how to, so I'm glad and thankful for getting the opportunity to translate for the HDYO so I can finally help out the way I can.
My name is Helle, and I am 24 years old. I live in Aarhus where I study chemistry and mathematics at the university. My mother has Huntington's disease and she lives at a nursing home only for people with Huntington's disease.
When I was a child I did not know anything about Huntington's disease, although my grandfather was affected by the symptoms. Around my 18 years birthday in January 2005, my mother called me just to tell me about Huntington's disease. I lived alone at this time, so I got the message alone in my little dorm room over the phone. At this point my brother, who is five years older than me, knew nothing. I had to call him and pass him the message, which was very hard for me. After this we started the process to get tested together, and in the summer 2005. My brother was tested positive and I was tested negative, we followed the statistics one of each unfortunately.
During the test process I did read a lot about Huntington's disease, but I thought it was I bit difficult to find something 'just for me'. That is the reason I work for HDYO, to help develop something about Huntington's disease just for people like me: young, alone, afraid and unaware of the different sides of Huntington's disease. I believe that if this site in Danish helps just one person, all my translation work has been a success.
Hi, My name is Marica, i’m 22 years old, and i’m from Milan.
In my family my grandma ( she is death before I born) my mum is sick since when I was born, and now she is in vegetative state by 2002, I’m only child and I’ve been testing positive last year.
My dad is involved in Milan ‘s Huntington disease association by twenty years and he had always took me in association’ s meeting, and I know about this disease since when I was very little, and also about the test. Now I’m a part of administration’ s association as my dad.
I’ve decided doing test when I was 18, but everybody told to me I was too young, and so I did it last year.
I’m a basketball player since when I was 7, and I like it very much!
I really believe in the HDYO, it's a great way to reach young people and give them the opportunity to meet with others who will understand and support them.
My name is Lucres and I am 41 years old. I became involved with HDYO through a dear friend of mine who is affected by the disease himself. I've seen him struggle with the dilemma of getting tested or not, how to care for his affected parent and where to get the right information and help. Also, being a researcher in the field of child- and adolescent psychiatry, I have seen how it can affect children and adolescents when their parents suffer from serious illnesses, especially when they are at risk of developing the illness themselves. I find it immensely important for children, adolescents and young adults to have easy access to information that is understandable and relevant for their own age. I am therefore very excited about HDYO and I did not hesitate for one second to join the translator team! It is my wish that you all will find the information that you need on HDYO, and please don't hesitate to give us feedback, also when you feel important issues are not covered, because it will help us to develop HDYO as a reliable and relevant source of information for you and all other young people affected by HD.
My name is Jaco, 47 years old and I married into a family with Huntington Disease. My mother in law passed away several years ago. For some years the disease seemed relative absent but now it kicks in dramatically into the next generation. My wife doesn't have the symptoms herself but 3 of her brothers/sisters do. It is terrible to see how the disease takes away the future and hope of these young people. Being healthy myself, I feel that I need to do whatever I can to help. Translation of the articles is one aspect where I can help and I am very happy to do so. Reliable information and good advice is very important. Being able to read that in your own language is in my view essential. I am sure that the articles will help those who are affected by this disease.
My name is Martijn. I am 23 years old and currently finishing my studies at the University of Groningen. Several years ago I heard that my aunt was affected by HD. Soon after, we found out that my father carries a faulty gene as well. As I grew older and wanted to know more about HD, I applied for the World Congress of HD in Vancouver, 2009. It was there that I came into contact with HDYO and decided to join them. As of today, I am still a member and happily translating parts of the website such that everybody affected by HD is able to read about it in his or her own language. Last but not least, last March I have taken the predictive test and tested negative :) I hope you will enjoy reading this website and that it might help you!
My name is Dirk. I am 43 years old (but I used to be younger). I've tested gene positive and I'm in the early stages of the disease. Twenty years ago we suddenly heard that my mother was affected by HD. We were shocked and tried to find some information about how to care for my mother or whether us children should do the predictive test or not. In the library there was only one little book (and no internet). The Dutch HDA could provide some more information and especially the opportunity to talk to young adults in the same situation. This helped us a lot in making decisions for my mother's and my personal situation. I'm so thrilled that at this moment it is possible to have worldwide access to the latest information from HD specialists, written in a language that young people understand, and to have a chance to discuss with young adults from all over the world. Also working for HDYO is a great experience, by meeting many different people and really making a difference by sharing the best possible information and your own knowledge and experience. So, I really hope you get some answers on your questions from HDYO, and please let us know if you feel there's a topic that's missing on HDYO.