Author
Alpha1 Deutschland eV, as published in the Alpha1 Journal 1-2024.
Our association is pleased that the topic of alpha-1 antitrypsin deficiency has been featured several times in both WELT and STERN. As part of WELT's "Allergies & Respiratory System" campaign, 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 other affected individuals. 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, invisible disease makes it difficult to explain to others… Over time, I have learned a lot about it and now know that it helps to share experiences 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 term 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, genetic 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 are 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. Here are two of the articles online:
Download the issue on Allergies & Respiratory Systems
Download the issue GOOD AIR despite diseased lungs
Download the issue on air and lungs
