Karen, living with Alpha-1 Antitrypsin Deficiency (Alpha-1)
I am Karen, and I am 46 years old and an elite disabled athlete. Because of my plasma therapy, I can participate in sports, run a nonprofit that works globally to socialize and mobilize people with lung disease, and spread information to the public about lung disease, and Alpha-1 in particular.
My plasma therapy has given me part of my life back. I have slowly but surely over the past six years rehabilitated to a life in sports, and today I am the first athlete under oxygen therapy with certification from the World Anti-Doping Agency for the use of oxygen therapy in competition. I also do obstacle course racing (OCR), and I was the first athlete under oxygen therapy to participate in the OCR world championships. My life in sport is far from over, my goals are high, and I am thrilled to pave the path for those who come after me.
I am a powerlifter in the Norwegian non-disabled federation and a disabled strongman in the elite class with several world records under my belt. Because of my therapy, I can continue my quest to change the Paralympic criteria — I want children with cystic fibrosis, for instance, to be allowed to have a Paralympic dream (everyone with lung disease is currently excluded from parasport).
I am forever grateful that I won in the “postcode lottery” and got my diagnosis in a country that offers treatment. This is also why I work hard for others to get access to treatment. Before my plasma therapy was set in, I fought for my life for over two years — years that were mostly spent in hospitals and rehabilitation. When I came out on the other end, I had moved. Shortly after that I got my diagnosis, and all the pieces of the big puzzle with my lungs were laid. Though the path back to life was long, already after the first infusion, I felt something had changed in my body. Over the next years, I rehabilitated from not being able to walk and talk to a life in sports.
My life is truly grand. I enjoy it to the fullest, and I am grateful for every single good day I get. The plasma therapy is giving me a second chance in life. To live with Alpha-1 and lung disease can be hard and challenging, but with access to therapy, I can live a full life.