HD Community Insights: Knowledge, Empathy, and Encouragement – The EHA Conference Inspired Me

Almost exactly 18 months after my diagnosis of suffering from Huntington’s Disease, I embarked on the journey to the European Huntington Conference in Belgium. The days in Blankenberge became an informative and occasionally overwhelming experience for me. Community, compassion, and empowerment – these terms roughly describe my memories of those days.

I had been looking forward to the event, for which I had registered about six months earlier. Unfortunately, my health deteriorated so much in the run-up to the conference that I could barely walk. But I wanted to go!

So, I borrowed an electric wheelchair and set off to Belgium accompanied by my favorite person. The journey was a small adventure as all direct trains were canceled. But with the help of many helpful people we encountered, we made it to Blankenberge after 10 hours.

The hotel staff was very friendly and allowed the exchange of a standard room for one suitable for wheelchair users. Thus, I spent the free time during the conference days in accommodation adapted to my needs on the ground floor – what a luck! The days were so intense that I repeatedly sought my retreat. More than once, overwhelmed by the wealth of information, I almost fell asleep while sitting.

On the opening day evening, there was a grand welcome, old acquaintances celebrated enthusiastically. Newcomers – like me – were warmly welcomed into their circle, and soon my favorite person and I felt embraced by this community.

300 participants had made their way to Belgium to attend the European Huntington Association conference. The language mix could be described as Babylonian: English, French, Portuguese, Spanish, Norwegian – yes, I even heard fragments of German. And as wonderful as it was to make initial connections, after about an hour, I withdrew to sleep! This would happen to me more often because HD had already significantly restricted my capacity.

Astri Arnesen, the president of the European Huntington Association, opened the conference and reflected on an impressive 30 years. It was astonishing to see the progress made during this time.

During the conference, I heard stories from people in different life situations: a 23-year-old shared how it feels to weigh whether to get tested as a person threatened by Huntington’s. Participants in their 30s told how they led fulfilling lives despite the diagnosis. There were also those who had been spared the disease but had to see their beloved family members live with its consequences.

Especially moving was the speech of Tess, a Swedish HD family member. Her words struck deep, and our subsequent conversation revealed Tess as someone I could identify with as an affected person. I still feel a camaraderie with her, even though she lives over 1000 kilometers away in Southern Sweden.

On Friday afternoon, there was a lecture on “Facing Difficult Decisions” by Dr. Liessens. He and his team described how difficult it is to decide whether and when the right time has come to entrust care to professionals and be accompanied as an HD patient in a facility.

With a comprehensive overview that made my head buzz again, he covered the various life issues to consider. For example:

– How to deal with financial matters?

– How can a patient navigate in the new environment, and when is the right time to do so?

– Which facility provides the optimal care?

– Are there reasons to stay at home longer, is it right and important to accept professional support now, even if I am still at home?

His statement, “With Huntington, there are no easy decisions,” literally burned into my memory, and I thought, “Exactly! There are no simple solutions in connection with a progressive illness. Especially when it gradually changes body, mind, and soul, albeit not always to the same extent. But it always alters many dimensions of one’s own life.

And since each of us is involved in many different connections – private, professional, and/or public networks – these also play a role in decision-making.

Due to the experience of the first two days, on Saturday, we only selected one topic:

The Saturday session gave me the opportunity to exchange ideas with other patients in a small group. Rob, who hosted this group, is also a gene carrier. Friendly and empathetic, he created a safe space where everyone could show themselves and, if they wanted, express their experiences, emotions, wishes, and hopes. I have rarely experienced so much challenging fate in a relatively small space; as well as the willingness to see and hear each other. Thank you, Rob, for holding this space.

Meanwhile, my favorite person had the opportunity to exchange ideas with other family members and caregivers in the adjacent room. Similar to me in my group, he was touched and pleasantly surprised by the openness of this meeting. Thanks to Svein’s moderation, everyone had the opportunity to show themselves, share their experiences with others, and engage with individual coping strategies.

Neither Sigurd nor I participated in the leisure program. Not because we didn’t like the offer – no! – but because we used the time to exchange ideas, develop our own thoughts further, and discuss ideas and plans for the future.

The last evening was enriched by a small program. A song specially written for the Huntington community was performed by a group of participants. Unfortunately, we had to start our journey back very early on Sunday morning and thus missed the reports from representatives of the research.

Saying goodbye to our new friends, acquaintances, and active members was difficult for me, and the thought comforted me: There will be a reunion at the next conference in Strasbourg next year!

Overall, I can say that the EHA conference “Knowledge, Empathy, and Encouragement” was an event that provided valuable information, support, and community for both me as an affected person and my family member. In my perception, it marked another important step towards a better understanding and improved quality of life for the Huntington community in Europe.

This article was written by Nancy Gasper, participant in the European Huntington Association conference in 2023