It is not easy to describe the impressions and the feelings we are left with having participated in our first ISMRD conference. As many of you already know, it is all pretty new to us, as Pernille was diagnosed in late march this year. We are still getting used to the idea and the fact that Pernille’s future will be different, challenging, and also painful and hard for her.
Since there are no other people with ML III diagnosed in Norway or Scandinavia – that we know of, the knowledge in this field in the healthcare system and among doctors here is very poor. We all had to go online and read as much as we could find. As a family we were very unsure of what we would hear and see as we began our long journey to Charleston this summer.
After coming home again and processing all of our information and impressions, we are left with a greater understanding about this disease. We learned so much about ML some of it good and some of it not so good. We now have knowledge and understand more about what is happening in Pernille’s body. We know that her development will be slow and understand the future challenges she and we together will face. Although each child with this disease is unique and the disease may and often does proceed differently from person to person, there are a lot of things we see in common.
With the knowledge we now have, we can inform our doctors here at home about what will happen and what areas they need to follow carefully. This will help her future. Besides the knowledge and ability to meet with the premier experts in this area we also established good friendships with other affected children and their families which we truly appreciate. Being able to talk with others who have been in this position longer than us and who can provide advice and support is just overwhelming and fantastic. We would again like to thank Jenny Noble for inviting us to this conference to meet the rest of the ISMRD family and to thank everyone for welcoming us in. We hope to keep in touch through email and facebook. We will see you all again at the next conference!
Birthe and Truls Rolls