The complete fascination of a protein
As a young doctor, Eeva Piitulainen was fascinated by the protein Alpha-1 Antitrypsin and what problems a deficiency of it will entail. The protein was discovered in Malmö in the 60´s. And as Eeva started building the interest, she found it remarkable that no pulmonologist was conducting research on this topic in the very city where the protein in fact was discovered.
Eeva has dedicated her professional life to researching Alpha-1 Antitrypsin Deficiency and in this podcast she tells us the story about how the protein was first discovered, about the combination of smoking and Alpha-1 Antitrypsin Deficiency, and why the treatment options across the world are so different from each other.
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.
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.