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Karen went to Germany and was given 10 extra years

Where you live can definitely determine whether you can receive treatment for Alpha-1 Antitrypsin Deficiency or not. Since she was a child, Karen had problems breathing, and her doctors thought that she probably had asthma. Shortly before Karen and Torbjørn met eachother, Karen was informed by Norwegian doctors, that her lungs were in such a bad condition that she probably only had one more year to live.

When Karen met Torbjørn and moved to him in Germany, she saw a doctor who quickly established that she had Alpha-1 Antitrypsin Deficiency. A diagnosis for which she could receive treatment in Germany. Here, treatment was already widespread at this point and had been available for years. The treatment gave Karen new strength, and in the ten years that followed, Karen used extreme sports events to spread awareness of the disease. This way she could help others to receive a correct diagnosis - and through this, the opportunity for treatment. Just like her. And after Karen's death, Torbjørn tries to continue the work she started.

A1R TIME is initiated by CSL Behring. Our goal is to spread awareness about Alpha-1 Antitrypsin Deficiency and to create a community for all affected by the diagnosis.

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The long road to diagnosis

Gunhild Nørhave knew that something was not right. She was 18 years old and short of breath. When it was at its worst, her lung capacity was down to 20 percent.

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FIN-OTH-0020 Apr 2024