Last week, the Moving Forward team organised an online session on the topic: One disease, many stories – living at risk. 

It was an evening characterised by openness, warmth and honest reflections from people who know the disease intimately, but who have chosen not to undergo genetic testing.

There were 16 participants gathered that evening, and at the centre were three courageous people of different ages who shared their personal stories. We had deliberately chosen different age groups in order to highlight different perspectives – both in terms of where people are in their lives and how their experiences with risk affect their choices and everyday routines.

Those who shared their stories have all been active in the Norwegian HD Association for some time. They said that getting involved and being part of the community has been both supportive and meaningful. At the same time, it was clear that openness and vulnerability are something they do to help break down stigma and provide support to others in the same situation.

The conversation was led by the Moving Forward coordinator, Julie Skarberg, and started with a short introduction before moving on to the stories. After all three had shared their experiences with HD, we opened up for questions and reflections from the participants. The topic is sensitive and personal, and there were not many questions – but the gratitude in the room was clear. Several people expressed how powerful and important it was to hear these stories and how much they appreciated the openness and honesty.