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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Bounced between different hospitals
It has been three years since the Alpha-1-Antitrypsin Deficiency treatment was approved in Denmark. But even if you meet all the criteria for being eligible for treatment, being approved for the treatment can still be difficult, according to Dannie who has first hand experience of the reluctance in the system.
Early diagnosis offers better treatment options
Lise lived without a correct diagnosis for years and was past 40 before she was diagnosed with Alpha-1-Antitrypsin Deficiency. Today she has become too ill for medical treatment, but has fortunately benefited from a valve operation.
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.