Author
Patrick Straub, agency ultrabold, as published in Alpha1 Journal 1/2024.
Our association is pleased that the topic of Alpha-1 Antitrypsin Deficiency has been addressed several times in both WELT and STERN.
As part of the WELT campaign "Allergies & Respiratory System," Marion Wilkens shared her personal story and experiences with alpha-1 antitrypsin deficiency. In her article, she speaks openly about the challenges of her diagnosis and offers hope to others affected by the condition. She emphasizes the importance of mutual support, which provides crucial assistance to many people with alpha-1 deficiency. Marion sees it as one of her main tasks to promote and strengthen this exchange.
„Being affected by a rare disease that is not visible makes it difficult to explain to others… Over time I have learned a lot about it and now know that it helps to share and talk about it,“ says Marion Wilkens.
The article in STERN also highlights important aspects of the disease. Shortness of breath is a frequently searched keyword on the internet, often due to a lack of diagnosis. Many diseases have similar symptoms, which complicates diagnosis. Alpha-1 antitrypsin deficiency is a rare, genetically determined disorder that is often overlooked. Experts estimate that around 20,000 people in Germany live with a severe deficiency, but only 2,000 to 4,000 have been diagnosed. Diagnosis takes an average of 5-7 years.
We are proud of the attention our work and our members' stories have received, and hope they reach many more people. You can find the articles online here:
Article Allergies & Respiratory System
Good air despite diseased lungs
