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.

Read the full article from Enroll HD at https://www.enroll-hd.org/the-youth-connection/

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