Life with Huntington’s disease: An Interview with Matt Ellison from HDYO
We were lucky enough to have a conversation with Matt Ellison, the founder and project coordinator of the Huntington’s disease youth organization (HDYO). The Huntington's Disease Youth Organization is a non-profit voluntary organization that provides appropriate information and education, along with support for young people impacted by Huntington's disease. Matt talked with us about the importance of having a support system, what he would tell families struggling with a new HD diagnosis, and the most challenging (and rewarding) parts of his work. – Yael
Why is it important for people living with HD to have a strong support system, both inside and outside the family?
HD is a very challenging condition for the whole family to deal with. It makes sense that the harder something is to cope with the more support you need to deal with it, from inside and outside the family. Family support is not always a given, HD is quite stigmatized, meaning many families struggle to speak openly about HD in their family. Outside support is not always in place either. HD is fairly rare as well, so you are unlikely to bump into someone on the street who is also dealing with HD. I work with young people impacted by HD through my organization and we see so many young people saying how isolated they feel trying to cope with HD because nobody talks to them about it. Feeling that you have support from your family and outside from services and the wider community can be the difference between coping and not.
What is something you would tell families of individuals who have been recently diagnosed with HD?
I would say take it slow, give yourselves times to adjust to the news that HD is in the family. Many people, when someone in their family is diagnosed with HD, want to get tested themselves straight away to see if they carry the expanded HD gene or not. Testing is something that is life changing and actually incredibly challenging to go through the testing process and receive your results, and then deal with those results for the rest of your life. That is difficult and you must be fully prepared for that journey. People who have just found out about HD in their family often rush this decision on testing and my advice is always to take it slow, give yourself time to reflect and adjust to the news, think carefully about whether now is the right time for you to get tested or not.
What can they do to better prepare for life after an HD diagnosis?
Get educated on HD and learn about what support options there are in your region of the world. This journey is a whole lot easier with people around you who understand. If you don't understand HD then learn or ask questions. It will mean you can approach future hurdles with the whole picture of how best to navigate them.
What is your foundation’s most used resource? Medical advice/Research participation/ Financial aid…?
I set up the Huntington's Disease Youth Organization (HDYO) in 2012 to provide support and education for young people impacted by HD around the world. In that time (5 years) we have had 2 million visits to our site, 2,000 people have contacted us for support, our site is available in 10 languages (as is our support service), our educational content has been shared 60,000 times and our videos watched over 200,000 times. We've done 5 youth camps in 3 continents, with over 250 young people impacted by HD attending those camps for free. We are considered the best place for young people to learn about HD. I think our efforts as a whole are our most used resource.
Has technology changed the way people are connecting with each other and sharing information about HD management? How is your foundation putting new technology to work?
Yes, social media makes it a lot easier for HD families to connect with each other, this is a big plus to fighting those feelings of isolation. Of course, when people have questions the community can provide their experiences in response which can be so valuable. Working with young people with often connect through social media to provide support or reach out with opportunities such as youth camps. We recently also developed an interactive program for children to learn about HD in their own special way, it is called HDYO Land.
What do you consider to be the most profound/inspiring part of your work?
I am regularly inspired by the young people we work with. We have fought for young people's right to support and education to better cope with HD, so when we speak with young people who are dealing with so many challenges and they are a teenager, it makes me upset, annoyed, angry that they don't have enough support in place to deal with what life is throwing their way. But most of all it makes me want to fight even more to ensure young people impacted by HD worldwide have access to support and education. Usually after this contact, I am grateful that we have put HDYO in place as that is how these young people find us for support.
Anything else you’d like to share about your experience?
I grew up in a family with HD, my father was diagnosed when I was 7 years old and passed away when I was 21. I struggled a lot with so many things during that period of my life. My own experience, along with the lack of support globally for young people in HD families, made me passionate to put something in place to provide the support and education young people require. Anyone who wants to connect, my email is matt@hdyo.org don't hesitate to reach out.