On Monday 17 June, we hosted an online session for the Norwegian HD community with a sensitive and important topic: testing positive for Huntington’s disease. We invited three people of different ages and from different walks of life to share their personal experiences. Each of them has tested positive for HD and they came forward to share their stories with us – honestly, courageously and movingly.

They took us back to when they first learned about the disease in their family, how they experienced the uncertainty, and what made them decide to get tested. They also shared what it was like to receive the answer – and, not least, how it has affected their lives since. The speakers also shared with the attendees what they think differently now, what choices they would make again – and what they might do differently.

For many of the participants, hearing others’ personal experiences was powerful and rewarding. The atmosphere throughout was calm, intimate and respectful – a space for reflection and community. Although not many questions were asked verbally, we received several warm and grateful messages in the chat. Several people wrote that it felt safe and valuable to be part of the conversation, and that it was very rewarding to be able to sit together and talk about the disease.

Several expressed gratitude for the honesty and openness they witnessed. There were a total of 14 participants in this online session.

We are incredibly grateful for the contributions of the three people who shared their stories, and for everyone who participated. It makes a difference to be able to talk together – and listen – about things that can be difficult, but also important and close to our hearts.