A young service user explains the real value of our Youth Engagement Service and being part of HD Youth Voice.
What is your experience of the Huntington's Disease Youth Engagement Service
"I think we met in school, so school was involved, because of my Mum having Huntington's. So because school got involved with everything, I ended up meeting James [HDYES] and it's progressed from there. It's really helped me out. I found it absolutely amazing. It's been helpful so many times, so much in the past and even now and in the future it's going to help more and more."
How has it helped you navigate living with or being affected by this disease?
"I was able to learn much more about it and then obviously the learning progress of Huntington's, the learning about how it's going to affect people and how it affects me as a young person as well, is something that it helped quite a lot with that one."
What kind of support or resources have you found the most valuable?
"The Huntington's Disease Association website and I remember getting not a letter, but a little booklet. Yeah, I'm reading through that and that helped quite a lot because then I could visualise this is what’s what. That helped me a lot as well. The HDYV and HDYES and everything as well."
What motivated you to get involved with the Huntington's disease youth voice project?
"I genuinely wanted to help young people. Knowing that I was alone, but also not alone at the same time when I was a kid. But having the youth engagement service motivates me just more and more and more, I just to be there for people who are going through the exact same stuff I was going through. Meeting so many people at the HDYV residential who went through the exact same situation as me. It's been massively beneficial to me as a person. I'm so socially awkward, but that's not going to change! But meeting so many people and everything is just it's amazing."
What are your hopes or goals for your involvement with the Youth Voice project?
Getting more people knowing about it as well, and not just people who are directly involved with Huntington's but also people who are wanting to learn more about Huntington's as well. I think that's something that I’m wanting to do more.
Thank you to Iris for sharing her story with us. If you would like to know more about our Youth Engagement service and how we can support you, please click on the button below.
