My name is Astri Arnesen and I live in Kristiansand, a town in the south of Norway. I live here on the waterfront with my husband. We have two adult daughters.
During my childhood and adolescence back in the 60s and 70s, my mother changed and slowly but surely she was more and more affected by Huntington`s Disease (HD). Although many in her family – her father and aunts, were suffering from HD, nobody talked about it. It was just one of those things that you didn’t mention, and it was not until 1982, after 10 or more years with symptoms, that she was diagnosed by a specialist in Oslo.
At the same moment me and my siblings learned about the genetic risk. We had a 50% chance of having the Huntington mutation. If you have that, you will get sick at some point in life. Some get sick early, the most common is aged between 35 and 50, others late in life. It was of course scary and difficult to handle this knowledge.
But fortunately, the Norwegian Huntington Association had been established just a few years earlier and I got in touch with the woman who was running it. It was such a big relief to speak with someone who immediately knew what this disease was about. The association organised weekend seminars where I met others with HD in their family as well as doctors who knew a lot about the disease. In fact, being with others and feeling part of a community was a life-changing experience and I have been active in the association ever since.
Since 2016 I have been the president of the European Huntington Association (EHA) (www.eurohuntington.org) It is not an understatement that the Huntington community and my colleagues and friends here, are my second family. They mean the world to me, although 15 years ago I did the genetic test and found out I did not have the mutation. It felt like I had got the winning ticket in the lottery of life.
Nevertheless, HD is still a huge part of me and will always be. So my engagement continues and since 2016 it has been a full time job.
I feel fortunate to be able to contribute to improving the situation for those affected by HD. We are a small team, but together with the national member associations, we make a difference and play an important role in increasing the knowledge and understanding of the needs the patient and their families have.
Astri Arnesen
We also help bring the patient voice to decision makers and drug developers. Currently we have no disease modifying therapies for HD, but there are a lot of promising clinical trials ongoing or being planned. It’s exciting times, but we are in impatient!
Right now one of the projects I am most proud of is the Huntington Academy (huntington-academy.org). This is an online resource for carers – both family and professionals. It has been made possible through some funding from the Erasmus+ program and a lot of work from EHA and 3 national HD associations. I hope this resource can reach people regardless of where they are based and be of help to manage their everyday challenges and that patients experience more understanding and get the support and care they need.
Astri Arnesen, President of the European Huntington Association (EHA)
Patient Journey presented in Strasbourg in 2024
