Author
Heike Isensee, as published in Alpha1 Journal 2/2025.
„"Same procedure as every year," one could almost say. For the fourth time in a row, the South German Alpha1 Patient Day took place in Stuttgart. Approximately 130 Alpha1 patients and their families accepted the invitation from Dr. Alexander Rupp (Pulmonology Practice in the city center of Stuttgart). The event was once again held at the Sparkassenakademie near the main train station. The day before, attendees could undergo examinations – essentially lung and liver checks – by the friendly and competent team from RWTH Aachen University and Prof. Pavel Strnad. The examination rooms were well-attended until Saturday afternoon. It's truly wonderful that so many young medical professionals dedicate their weekend to our event.
Dr. Rupp and Marion Wilkens welcomed the participants early Saturday morning, after which the program proceeded rapidly with a series of informative presentations. Ms. Wilkens briefly outlined the latest news from Alpha1 Germany. Following this, Heike Isensee introduced herself as the group leader and Lothar Sailer as the new deputy leader of the Stuttgart region self-help group.
After Dr. Rupp himself had given an update on asthma, COPD and the various therapy strategies, on comorbidities, vaccination recommendations and much more, Prof. Rembert Koczulla (Schön-Klinik Berchtesgadener Land) was connected online from Salzburg to speak on the topic of advantages and disadvantages of home self-infusion.
Ms. Wilkens then gave a more detailed report on new developments within the association and explained why the data obtained from studies such as the EARCO study are so important for us Alpha1 patients. She encouraged those present to participate in relevant studies to improve the long-term treatment of Alpha1. Dr. Malin Fromme from the University Hospital in Aachen explained the progression from a healthy to a diseased liver and the corresponding diagnostic options, risk factors, and new therapies. Looking ahead to the hopefully not-too-distant future of treatment options is encouraging.
Dr. Tabea Hochstetter from the pulmonology practice in the center of Stuttgart then told us about the various methods one can try to get rid of thick mucus. First, we learned how lung damage leading to mucus buildup can occur.
After a short coffee break, Michaela Frisch led the participants in a pulmonary exercise session, emphasizing movement and coordination. Pulmonary exercise – whether online at home or in person – is one of the most important pillars for maintaining optimal health. To conclude, the participants were asked to share their own "diagnosis journey," and Dr. Rupp took notes on each story. This resulted in a diverse collection of stories from the "ALPHA1 ON THE GO" series, all centered around this seemingly still too often overlooked disease. Together, we brainstormed ideas on how to raise awareness of Alpha1 among physicians.
It was wonderful to see so many new faces at the event, as well as many familiar ones. The breaks provided ample opportunity for conversation and exchanging the most important information from this training course – namely, insights from those affected, for those affected. The organization by WK-Fortbildungen was reliable. A huge thank you goes to the representatives of the pharmaceutical companies who made this event possible through their generous financial contributions and who were on hand to answer all our questions. And of course, we thank Dr. Rupp, who has been organizing this important patient day in southern Germany for years and is always there for us Alphas.
