For Brain Awareness Week 2026 we are raising awareness of the mental health impact of neurological conditions on children and young people.
Throughout the week, we are sharing stories from children and young people on how having a neurological condition, or living with neurological conditions in the family, has affected their mental health. Names have been changed for anonymity.
This is Rebecca’s story
Can you tell us a little about your Huntington’s Disease Association (HDA) journey?
I have been involved with the HDA since I was around 13 years old when I found out my dad had Huntington’s disease. I have been supported by 2 youth workers during this time. I have also been a part of the Huntington’s Disease Youth Voice group from 2023-2025 through the HDA, HDYV is a group of 16-28 year olds who work on different projects each year. I’ve had a lot of support from the HDA throughout the time I’ve been involved with them! I am also an ambassador for the charity.
Can you tell us how your transition from young person services to adult services is going?
The transition so far feels like it is going well, I have had a call with the youth worker from the young persons service who has discussed the process of moving to the adults service with me. We have a transition meeting booked in with the youth worker and the member of staff from the adults service for the area I live in, to allow me to get to know the member of staff from the adults service while also having the youth worker there. There is an adults WhatsApp group through the HDA which I am in, where events that are happening are shared in there and people generally can talk in, which helps to know that there’s support from that too despite it being a different service.
How would you say your mental health needs are being met?
My mental health needs are being met by having the transition meeting, I have been worried about the change but I feel that the meeting will be reassuring to know that despite moving to a new service; support is still available. Knowing that there is someone who understands Huntingtons disease well, even if I don’t get to speak to them often, is quite helpful and reassuring too.
If any has there been any mental health impacts in your transition what are they?
There has been a fair bit of anxiety around moving from the young peoples service to the adults service, especially as the adults service works differently to the youth service. In the youth service, the youth workers often reach out to the young people, whereas in the adults service it is the person who needs support that contacts the service. I have had some anxiety about this, as it can be hard to reach out and let someone know you need help. It is also quite sad that the time in the youth service is coming to an end, as I have got to know the youth worker I have well, as I have had support from them over a long period of time. This has impacted my mental health as well.
Do you feel included in decision making about your health?
I do feel included in decisions about my health, I have considered genetic testing for Huntingtons disease and have been supported really well in making decisions around this. No one has ever made a decision for me regarding this, but they have given me information, resources and time to allow me to make the decision myself.
How do you feel talking about your HDA and how it effects your daily life?
I feel very happy talking about my journey with the HDA, as it is a charity not everyone knows about so it is an opportunity to educate others. Huntingtons itself affects my daily life a lot as there is a constant worry about whether I could have it due to the 50:50 risk. The HDA’s support really helps to combat this; as they do so much to support anyone impacted by Huntingtons.
For more information on mental health and condition specific support services, visit:
