Trude T. - Diagnosed at age 16

I am from Norway and when I was 11 years old I got SLE. But at that time in 1974 they could not figure out what it was. When I was 16 years old, in 1979, I got terribly ill again and was rushed to a hospital in Oslo specialized on Rheumatic diseases. And after 2 months there and a lots of examinations I got the diagnosis SLE. 

I finished my education and started to work as a secretary. When I was 29 years old I got very sick and my hands got very affected (Jaccaud's Arthropathy). Very seldom with these hands having lupus. I had to quit my work in Oslo and decided to move back home to my hometown. 
In 1992 the first conference in Oslo was made only for SLE. Then I got to meet others and was well educated about my disease. In 1996 I started Agder Lupus group, a group part of the Norwegian Rheumatism Organization. We had meetings with lectures, travel abroad and social meetings. Among great lupus conferences. We get to know all there was to know about lupus. I was their leader for 22 years. 

In 1993 after a lot of wrong treatments I got CNS lupus as well. I have had a lot of surgeries among knee replacements and broken femur. And got Osteoporosis very young. I have had remission many times and lived quite normal. I have travel and seen the world. Chile is as far as I have been. But nearly all my life I have been taking medication.

In 2019 I got shrinking lung syndrome, and I have only 42 % lung capacity. In 2019 I got the hearth disease Cardiomyopathy. 6 times I nearly lost my life due to lupus, but I manage to survive. I have been through 2 serious sepsis that nearly killed me. I live now in a caring home since the Christmas of 2022, and can not walk without my walker. I have pain 24/7 and am in need of help. Despite all of this I love my life and have become very strong, the strongest there is. I am a Norwegian warrior, 50 years living with SLE. 💜🦋