Marte Jystad

Marte Jystad

What is your role in Corience? How did you start?

I’ve been part of Corience ever since the idea first came up in the spring of 2007. My work in the project is twofold: I write articles on specific CHD-related topics, and I try to inspire new countries to join our European project.

What is your personal motivation to work for Corience?

One of my four daughters – Kjersti – was born with a heart defect. She is now 19 years old and has had three operations over the years. A huge motivation for taking part in this project is the opportunity to share my experiences, knowledge, and information with other parents and families in the same situation as myself. The need for information on CHD is the same whether you live in Norway, Italy, or Poland, and I am sure that working together across borders will generate great synergies.

Also, I believe it is crucial to communicate with health personnel, researchers, bureaucrats, and politicians. The best sources for information on living with CHD are those who are affected and their families, and we are obliged to share our experiences with the relevant occupational groups.

When did you decide to start working for a CHD organisation?

I have been working for our national Heart Children Organisation since 1989, when Kjersti was born; both as a volunteer and as an employee. My responsibilities in the organisation are varied – I lobby politicians and health authorities, coordinate conferences and events for health personnel and parents, write articles for our magazine, and provide counselling for our members, health personnel, teachers, etc.

Are there any unusual aspects about your life you’d like to share?

Having a child with a heart defect is quite frightening in the beginning, but in the long run I am convinced that it has enriched our lives. Against the backdrop of your child’s CHD, it becomes very clear what’s important in life.

Besides my family, I have two major passions. One is mountain hiking, and I hike as often I can. We have a cottage in the mountains where we spend about a quarter of the year. Spending time in the mountains is truly uplifting, and it is much easier to solve big problems when you’re on the mountain.

My other passion is music. I particularly enjoy 1970s pop, but I also listen to a lot of classical music. And a day without playing the piano feels wasted to me…