By Catherine Martin
Catherine Martin is Executive Director of the Huntington’s Disease Youth Organization.
Living with Huntington’s Disease is hard. Regardless of your connection to HD, there are some really tough days. But what if you were 14 years old, you were the main caregiver for your dad, and your mom was struggling to pay the bills? How would you juggle school, friendships, caregiving responsibilities, all in the midst of hormonal changes? This is the reality that so many of the young people we work with face every single day. These are the family members who are often invisible to the outside world. This is why Huntington’s Disease Youth Organization (HDYO) exists.
Secrecy Is No Favor
In 2007 I spoke at the World Congress on HD in Dresden, Germany on why we needed to do more to educate and support children and young people impacted by HD. To say this wasn’t a popular topic is an understatement. Family members, clinicians, scientists, patient group member all said “We shouldn’t be talking to kids about this, it’s too much for them,” or “It is OK for them to provide care to their family members but don’t tell them why they have to.”
This was not my reality, and I knew they were wrong. I grew up with various family members sick with HD, was caregiving for my grandmother from a young age, and my mom developed symptoms when I was a teenager. This was my normal. In our family we spoke often about HD, about the symptoms different family members were having, about our own risk, and about what we could do to help ourselves.
I was 13 years old when I first spoke to a geneticist. I had questions and needed to understand what HD was. Mom and Dad were supportive. They trusted me as an individual and wanted to give me the freedom to ask emotional and technical questions with a specialist so that I could grow. I was never scared of HD because of the education and support my parents provided to help me understand what was making people I loved sick. My childhood to me was normal and very happy.
Spreading the Message Through Europe
My family was involved in establishing the Scottish Huntington’s Association 30 years ago because they couldn’t get the education and support they needed as adults. The reaction from people at the World Congress just made me more determined to prove to this community that children and young people needed and deserved age and stage-appropriate education and support about HD as much as adults did. Over the next five years, a number of events took place that changed this community for the better.
We have made good progress, following hundreds of years of secrecy and generational trauma. The question now is how do we continue to grow so that everyone understands and experiences the benefits of talking about HD? I know from my life growing up in an HD family and subsequently working with HD families in Scotland, that hiding HD isn’t possible.Talking about it, finding specialists, educating ourselves about this disease and raising awareness changes the outlook of dying from HD to living with HD.
The Truth May Set You Free
As parents, protecting our children is a natural instinct. We don’t want them to see how scared, tired, heartbroken and vulnerable this disease can make us. As clinicians, we may limit our care to making sure our patients get the right medicine to treat their symptoms so that we can keep them as well as possible for as long as possible.
HDYO challenges both of these schools of thought.Talking about this disease more honestly is a big part of the solution. Clinicians need to start asking emotional questions along with diagnostic questions. Parents need to encourage their children to ask questions and challenge the stigma they encounter. If we can all, as a singular HD community, help one another to talk about the true impact of HD and tailor the support and education needed by each member of the family to be age- and stage- appropriate, then think how different the perception of this disease would be!
HDYO Opening Broad Channels of Communication
Providing education, support and events for young people under 35 years of age is the key objective of HDYO. In the seven years since we launched, HDYO has been viewed over seven million times; our educational resources (available in 14 different languages) have been shared 200,000 times. We have supported over 4,000 individuals from 96 countries and held 10 international youth camps in four regions (Europe, North America, Australia & New Zealand and South America). In 2020 we will host the inaugural Young Adult World Congress for HD in Glasgow, Scotland.
Giving children and young people access to trustworthy educational resources will not harm them — it will strengthen them. I grew up knowing about HD, and I lost some of the most important people to me to HD, but it has taught me about being kind, compassionate, living life to the fullest and seeing the good in every situation. HD has given me more than it ever took from me and I have my parents’ courage and strength in being honest and open with me to thank for that.
Our Progress In Spreading This Message
- Audit of services for children and young people in Europe
- Young people as speakers at World Congress, Vancouver
- First meeting of European Network to talk about establishing a working groups specifically about young people and HD
- First European youth camp for HD
- The beginnings of HDYO and HD Buzz emerged
- EHDN Young Adult Working Group established
- HDYO launched its platform in four languages
- Second European youth camp for HD
- Young people on the main stage at EHDN conference
More information about the Huntington’s Disease Youth Organization can be found on their website at: WWW.HDYO.ORG