I am a Med.Dr.h.c. at Karolinska Institutet, member of the steering group of the Swedish SLE network, and medical journalist.

Since 2017 I have been a patient advocate in Ioannis Parodis’s research team. Having been living with SLE for more than 40 years, my involvement in research gives me the opportunity to contribute with the experience I have obtained from my own disease, combined with the information I receive from people living with rheumatic diseases whom I meet, talk with, or have interviewed within the frame of my former work at the Swedish Rheumatism Association. This knowledge I also share with caregivers and researchers in lectures, conversations and book chapters.

I am a member of the editorial board of the Swedish book “Reumatologi, Studentlitteratur” (the fourth edition will be ready in fall 2024), and I have also been a member of the editorial board of the book “Barnreumatologi, Studentlitteratur”. During the time I worked within the patient organisation, I composed several books, each one dealing with how to cope with a rheumatic disease. I have been reporting advances and research findings within different rheumatic diseases in special research appendices, as well as in the magazine “Bulletinen”, a magazine about rheumatic inflammatory systemic diseases by the Swedish Rheumatism Association, for which I have been the publisher and editor.

I find it important that the voice of the ones who the research is done for is heard. I find it important that people living with SLE work together with SLE researchers. Our goal is common: a better life for the people with SLE in the years to come.