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The serious truth behind young people in HD families

September 29, 2017

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:


I was watching a video last week of a speech I made back in 2012 at Stockholm Euro HD Network convention. I assure you all that I don’t watch my own talks as a hobby, this one just happened to show up on social media so I watched part of it and it got me thinking. At the time of the speech HDYO had recently launched and this was our first big HD convention in which we were able to get up on stage and talk about HDYO and our goals moving forwards. In order to talk about HDYO I needed to talk about the reason why it was needed – the huge lack of support for young people in HD families. I remember the speech very well (you can see it here if interested:

I used my personal experience of growing up in a HD family in England to show how isolating an experience it is for young people looking for support. I was really nervous presenting this (you can tell in the video as well), the reason for being so nervous was because I practically had every key HD association (HDA) and professional in front of me listening to me for those 20 minutes or so. This alone didn’t make me nervous, I was mainly nervous because I was telling people their work for families up until now was not enough and that young people were being forgotten in terms of support. I knew a lot of these people already so to say what you were doing wasn’t enough and that as a community we were failing young people was a big statement. Looking back I feel it was a significant speech. The quality of it wasn’t anything special, but the points I raised about the struggles young people face in accessing support were extremely valid ones and had not been raised on stage like this before. So it was an important moment for young people I think. It put supporting young people into the spotlight for everybody in the community and HDYO has kept that spotlight on the community (and ourselves) ever since. I want to just mention that progress has been made since 2012 by HDYO and by a number of HDAs around the world. We are very happy to see HDAs taking on the challenge of providing services that work for young people and HDYO will and does work alongside the HDAs in this challenge. Credit to those that have made significant progress. But we still have lots of work to do. What else needs to be done I will save for another blog post perhaps. In this one I want to validate why young people need support.

On one part of my speech I compared the support I had available to me at the time (nothing really) to what my parents had (lots of professional services) and questioned why we felt it was ok as a community that young people are essentially left to deal with HD by themselves yet we provide a range of professional services for adults to help them cope with HD? I understand support varies globally and many adults have no support for HD either. But in many countries, as a community, we have developed adult services over many years but nothing for children/young people. It’s this gap in support HDYO was designed and works hard to fill for young people and it is here where HDAs have been making progress as well, more progress than was made before HDYO launched I would definitely say. Until recently there was very little research to back up the impact we know HD has on young people and highlight exactly why they need support. That was until last year at another EHDN convention when we heard a talk from Lucienne van der Meer from Holland who had done a study on the impact of hereditary diseases on families. As part of that study she looked at adverse (bad/negative) child experiences of those in HD families, compared to those families with breast cancer and those with no hereditary condition in their family. It was eye-opening stuff. Granted the study was fairly small with 74 people from HD families, 82 from Breast Cancer and 101 ‘normal’ families. But it was still very revealing. Overall, in the study, young people in HD families were 52.7% likely to experience some kind of adverse childhood event before the age of 16, compared to 45% in breast cancer and 24.8% for ‘normal’ families. Let’s look at the details: compared to ‘normal’ families, young people in HD families were twice as likely to experience domestic violence, alcohol or drug abuse, divorce of their parents, suicide of parent or death of a parent. And three to four times more likely to experience abuse (physical, sexual, emotional). Young people in families with breast cancer experienced less of these adverse events in every category but that’s not relevant to my point anyway. These stats essentially prove that young people in HD families are over twice as likely to experience traumatic and challenging events in their childhood as those in ‘normal’ families.

This is why young people in HD families need appropriate support. This is why HDYO had to exist. We see young people with these experiences all the time coming for support via our website or at our events such as the youth camps. It’s obvious for us being on the front line that these young people go through so much at a young age and deserve support to help them cope with their HD journey. When I attend a HDYO youth camp somewhere around the world I always get emotional when hearing the sheer scale of challenges some young people in HD families have faced. It is my inspiration to keep pushing for better support for these young people – the support they deserve. We must take young people’s issues seriously and we must take the support services they require as seriously as we take adult services.

To those young people reading this, if you feel an urge to fight for yours and other young people’s rights to support then get involved and make your voice heard. Demand equality for young people and adult services. If you don’t feel you have the same access to support for HD as adults around you, then there is work to be done and we need you to complain to us (HDYO) and your national HD Association. If enough people complain then the greater that spotlight on support for young people gets. We have moved from young people barely being mentioned in the support services for our community, to being a recognised area of need with some progress, but we need to push on and become an area where support for young people is equal to that of adults globally. To achieve that there is plenty to do in almost every corner of the world and your help and voice can make all the difference. Message me at matt@hdyo.org if you want to get involved.


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