We spoke to Amye about how our Huntington's Disease Youth Engagement Service has supported her and why she chose to volunteer her time with our youth panel, HD Youth Voice.
I got in touch with James [Huntington’s Disease Association] and it's been absolutely great. He's just helped me so much. Having someone to speak to, offering support, advice around getting tested and also just having that professional perspective.
Amye is a mental health support worker from Harrogate. She did not know about Huntington’s disease until she was 17. Huntington’s affects both her father and her uncle. Her nan died from the disease when she was two years old. Amye is also at risk of inheriting Huntington’s. "I knew that there was something not quite right with Dad in the way that he was acting, and like a change in his behaviour and things like driving”, says Amye.
Amye’s dad was tested during the covid pandemic. This was a difficult time for anyone accessing healthcare due to the restrictions. He found out his diagnosis over the phone. It was a few years until Amye’s parents spoke to her about Huntington’s, waiting until after her GCSEs.
Me and my mum were very open to speaking about it, and she's very supportive about me wanting to get tested and stuff like that. But it’s not really spoken about with my dad.
It was a few years until she engaged with the charity after finding the Huntington’s disease youth social channel.
The Huntington’s Disease Association shared a video that was very heartwarming. It made me feel a lot less alone to know that there was another young person going through it. And they had such a positive mindset about their experiences.
Amye continued, “I saw another video of someone from Harrogate, which is also where I’m from and we’re both a similar age. I messaged him and he helped me a lot. He introduced me to James [Huntington’s Disease Association] and also to Huntington’s Disease Youth Voice (HDYV) and we met up! It’s been great having someone who only lives ten minutes up the road from me and who can relate to what I’m going through in day-to-day life. It’s definitely made me feel less alone and it’s nice having someone who you can meet or call when you’re having bad days and you both understand what each of you is going through.”
Huntington’s disease can feel isolating which is why events, online and in person, are so important for the community to share stories and advice. These take place through branch and support group meetings and get-togethers. They also happen through online peer support groups, events such as our AGM, young adults residential and Huntington's Disease Youth Engagement Service (HDYES) residentials.
It can feel like a very lonely place at times, but it’s nice to know that you're not the only person who's going through this. This is why getting involved in support groups and things such as HDYV or their support group, HD Connect is very beneficial to speak to others in a similar situation.
Amye is one of the many young people to benefit from the Huntington’s Disease Youth Engagement Service. Over the past two years, the Lottery funding has enabled the service to grow. The team has increased from one Youth Worker covering all of England and Wales to four Youth Workers. Regular small events take place across the country as well as a yearly summer camp. Online bi-monthly peer support groups - HD Connect take place virtually and are run by our young people in HD Youth Voice.
Amye shares how important HDYES is for people like her.
I had my first Huntington's residential which was an amazing experience to get to meet so many people who are affected by Huntington's disease, and getting to speak about my experience with them. It helped me feel a lot less alone. I really wish I got involved sooner. The service [HDYES] is really important for young people, because I think it helps people to raise awareness and become positive advocates. It also helps people have a voice and to share their experiences like they wish they would have known at the time to help them, so they can use their own experiences to help others.
HDYES
If you would like to find out more about the work we do supporting children and young people, please visit our getting help section.
HD Youth Voice
Alternatively, if you are looking for other ways to volunteer with us, please take a look at our opportunities below.