Life for a young person in an HD family can be tough. At home, there may be responsibilities such as helping with household chores or being involved in caregiving. Outside the home, there’s the constant feeling of being an outsider. While other teens and young adults focus on studies and fun, youth in HD families have a separate, secret life that they rarely get the chance to talk about with someone who understands. Since the symptoms of HD usually strike adults, children and young people have sometimes been a bit of an afterthought when it comes to services and support.
When they met for the first time at the 2009 HD World Congress in Vancouver, two young people from HD families, 23-year-old American BJ Viau and 21-year-old Englishman Matt Ellison, discovered just how big this problem was. Around a dozen young people in HD families from around the world, including the two of them, had come to the congress on scholarships. As they all got to know each other they soon realized that the lack of information and support for children, teens and young adults was a universal issue. Across the globe young people were often left out of the HD community. “Youth weren’t told about HD, they didn’t go to fundraisers, young people didn’t participate in research,” says Viau.
The lack of accurate information was a problem, as was the isolation that can affect young people in HD families. “The impact of having a parent or other family member who has the illness is huge,” says Matt. “But youth support is not in the spotlight at all.” If young people became more involved in the HD community, they agreed, everyone would benefit.
A movement is born
Following that meeting Ellison and Viau formed the Huntington’s Disease Youth Organization, HDYO. The first priority was to create a website with clear, useful information about HD that made sense for teens and young adults. Launched in 2012, the HDYO website now includes a wealth of features such as a question and answer section, email support, information for parents and friends, a discussion forum, and various sources of information and advice. At least some content is available in nine languages.
One striking element of the site is a set of videos of young people from around the world talking about their experiences as caregivers, family members, and people with HD. Many are raw and intense, but some are also funny. Many youth in HD families never get the chance to meet someone else in their situation, says Ellison, so the videos are the next best option: One young person speaking directly about their own worries and experiences and difficulties.
By 2013, HDYO had raised enough funding to begin paying Ellison as a project director (Viau is the unpaid board chair). The group also organized a week-long youth camp in Spain, bringing together young people from across Europe for that chance to meet face-to-face.
The following year HDYO hired youth worker Chandler Swope, based out of the Washington, D.C. area in the US. She counsels young people one-on-one, works directly with families to find ways to talk about the disease, and connects with other HD families on social media. She also goes to regional events where HDYO hosts families to come out together for rock-climbing or other group activities.
HDYO’s next goal was to host a youth camp in North America. “Taking young people out of their environment gives them a whole new way to open up, and a new sense of safety to share what’s going on,” says Swope. Several such getaways had been held in the UK and Europe but none had yet been organized for the US or Canada. “There aren’t many opportunities to meet other young people in the US besides a convention,” says Ellison.
Meet you at camp
In August 2015 the plan became reality, with a weeklong summer youth camp held at a campground in Maryland.
The camp had many different purposes: a chance to learn about HD (and dispel myths), make new friends and have heart-to-hearts. “Within 24 hours the campers were sharing some of their deepest darkest secrets,” says Swope. In some families shame or fear of saying the wrong thing makes it hard to talk about difficult issues. Camp is a chance to talk openly about those problems with peers. It’s also an opportunity to have a break from caregiving or potentially stressful family situations and have some fun. “So much of their lives at home are focused on an affected parent, and that’s where all the energy and time goes,” says Viau. The camp is bordered by a river and a bay, and offers kayaks, standup paddleboards, volleyball nets and a swimming pool, as well as a huge harness swing.
Attendees were between 15 to 23 years old. Most had not yet been tested to see if they have the expanded HD gene, but some knew their status. A few campers were symptomatic.
At camp, group conversations included weighty subjects like the decision to test, relationships, or grief and loss. But a lot of the time was reserved for swimming or obstacle courses, and opportunities to make new friends.
For 22-year-old Mariah from Michigan, those new friendships were the best part about camp (Mariah was willing to have her full name used in this article but to protect her privacy we have not included it). She’d never met anyone else from an HD family, but even before the bus from the airport arrived at camp she’d already heard three other camper’s life stories. “It was really cool,” she says. “We were talking about how HD affects you and your friendships and your relationships and family members. It was cool to hear different people’s stories, and made us all realize that we’re all going through the same thing.”
For her, another highlight was hearing Western Washington University researcher Jeff Carroll, who is from an HD family and studies the disease, talk about research progress. “He explained HD from a science point of view, and it was very helpful to hear the facts,” says Mariah.
“It was cool to hear different people’s stories, and made us all realize that we’re all going through the same thing.” — Mariah
The week would bring a life-changing experience for her. Adopted as a young girl, she’d never met her biological mother and didn’t know how to find her. But Mariah did know that HD ran in that family. On the second night at camp the campers gathered around a bonfire, wrote down their biggest fear on a piece of paper, then tossed it in the fire. Mariah says her fear was that her biological mother might die before she ever got to meet her. She wrote it down and cast it into the flames.
Later, after talking about her situation with new friends at camp, some helped Mariah track down her biological mother—turns out she was living in a nursing home just over an hour away from her own town. She now visits every week.
Finding a friend
The needs of young people in HD families often get short shrift, says Melinda Kavanaugh, a professor of social work at the Helen Bader School of Social Welfare at the University of Wisconsin-Milwaukee. Youth caregiving is even overlooked as a subject of scholarly research: There are 22 studies exploring youth caregiving, in comparison to roughly 2,000 for adults, she says.
Before she was a professor, Kavanaugh was in the HD community for 15 years, and a social worker for six years. She created the group for children and youth to ease their isolation. Rather than sitting in a circle and talking—which many youth might not want to do—it emphasized activities like putt-putt golf or bowling. The idea was to offer a chance to hang out with other young people who know what it’s like to have a parent with HD, or be a part-time caregiver.
“A lot of people are scared to have friends over, they don’t know how their parent or grandparent is going to act,” agrees Mariah. One true friend who understands can make a huge difference: “If you have that one person you could trust, things might be easier.”
In collaboration with the HDYO board, Kavanaugh has conducted a formal evaluation of the youth camp to identify what worked and what didn’t. The complete analysis has not yet been published, but she’s already found that even this short experience made a big difference. “Not only is there a clear increase in quality of life and self-esteem and overall social support, but [campers] said things along the lines that they now have friends that understand them and their situation,” she says. Campers felt less embarrassed about HD and more hopeful knowing that other people are in their shoes. Swope has set up a private Facebook group for campers that she also monitors so that friendships forged at camp can continue to develop.
The next chapter
HDYO is still growing. “It’s an amazing organization,” says Cath Stanley, chief executive of the Huntington’s Disease Association in the UK. “They’ve done an incredible job putting together quality information which just wasn’t there before.”
Ellison and Viau believe their most important accomplishment is putting the concerns of young people in HD families on the map and demonstrating the need for specialized youth support and services. “Starting out we just hoped someone would like our website,” says Ellison. “And it’s grown so much from that.” At the end of 2015 the website added a new component, HDYOLand, to help parents talk to kids between ages 5 and 12 about the disease.
Applications are now closed for 2016 youth camps in both North America and Europe that will take place in August. The North American camp, planned to be held in the Washington, DC area in partnership with the Huntington’s Disease Society of America, will host 50 people between the ages of 15 and 23 from the US and Canada. The European camp will bring roughly 40 people between the ages of 15 and 25 from the United Kingdom, Ireland, Belgium, Germany, Sweden and Norway to a site in southern England. For those accepted there is no charge for transportation, lodging or food.
Future goals include establishing more youth workers around the world through partnerships with local organizations. Viau and Ellison hope to change the role of young people in the HD community. They believe that helping young people cope with HD will pay back dividends over the long term. “If we can support people when they’re young and educate them, they’ll be more likely to be motivated to get involved in studies like Enroll-HD, or fundraising or advocacy,” says Viau. “We‘re empowering them to fight back and do whatever they feel comfortable. The earlier we can reach them for support, the better.”
This story was originally published in the Spring 2016 issue of Enroll!