The long road to diagnosis
Gunhil knew that something was not right. She was 18 years old and short of breath. The doctor said she had bronchitis, later she was told it was asthma. When it was at its worst, her lung capacity was down to 20 percent. Today Gunhil is 57 years old, has undergone a lung transplant and is feeling better than ever. In this episode of A1R TIME, she tells her story; why the diagnosis was delayed, what the doctors could have done differently and what her little brother thought her about Alpha-1. This episode is in Danish.
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 complete fascination of a protein
Eeva Piitulainen has been fascinated by Alpha-1 Antitrypsin Deficiency and found it remarkable that no pulmonologist was conducting research on the subject.