Elin’s Journey with Huntington’s Disease
– Written by the Moving Forward team on 17th November 2025
Hi! My name is Elin Berg, I’m 28 years old and I live in the middle of Sweden. Before April 2024 I had never heard about Huntington’s disease, but in a single day my life changed in so many ways. My mum has HD. I decided to get tested as soon as possible because I just needed to know, I’m not very good at dealing with uncertainty. Fortunately I tested negative and since then I’ve been dedicated to raising awareness about HD, helping others and, of course, supporting my mum. Today, I’m a board member of the Swedish association and since this summer I have been part of Moving Forward which feels both meaningful and important.
I look forward to being a co-coordinator with Maria to make a difference for the families affected by HD. In Sweden we have YTAN which has been a successful way of reaching out to families and young people, but there is more we can do. In collaboration with Moving Forward I hope we can reach out to even more people and build an even stronger community.
As I am new to this community, I still remember the feeling of that first day of knowing. Knowing that everything had changed and that nothing would ever be the same again. I remember feeling lonely, devastated, and as if nothing would ever be good again. But I also remember my first contact with the Swedish association and the YTAN project, meeting others who understood my feelings and thoughts. I quickly realized how important it was for me to be seen and heard, understood, and cared for by people who knew exactly what I was going through. I still need my community, and I probably always will. But I also want to be part of someone else’s community – to be that person who sees, hears, and supports others in the same way I have been supported. I want to give something back to this incredible community, both in Sweden and internationally, and Moving Forward is one perfect way to do that.