Author
Heike Isensee, as published in Alpha1 Journal 2/2025.
On October 4, 2025, approximately 50 affected individuals, family members, and other interested parties were warmly welcomed by Prof. Ralf Eberhardt, Head of the Department of Pneumology and Internal Intensive Care Medicine. He provided the group with a clear and concise introduction to the topic of alpha-1 antitrypsin deficiency, emphasizing the importance of ensuring all participants have a solid foundation of knowledge before delving deeper into various aspects of the subject.
Marion Wilkens, Gabi Niethammer and Marion Deter presented the association and the importance of self-help groups and were pleased that both familiar members of the association and new affected individuals participated in the event.
Dr. Natascha Wehnert, senior physician in the Gastroenterology Department, gave a very informative presentation about the liver, a frequently affected organ that should definitely not be overlooked. Among other things, she presented the well-known APRI score, which estimates the extent of liver fibrosis based on the AST (GOT) level and platelet count, as well as the Fib4 score. This score also incorporates the ALT (GPT) level and takes age into account. Both calculation methods can be found on our website under 'Alpha-1 and the Liver'. Before the group gathered for a delicious lunch and lively conversation in the hospital's covered courtyard, Professor Eberhardt had planned something very special: a performance by the choir 'Out of Breath' from the Hamburg Conservatory, led by the charming Danish singer Pernille Sieprath. The seven members sang rousing, self-composed songs, both with and without supplemental oxygen, and had the participants on their feet. The use of the kazoo, a small membranophone, was very interesting. Singing into it sets a membrane in motion, thus changing the pitch of one's own voice. Like singing itself, this also trains the lungs.
What would a patient day be without a pulmonary exercise session? Silke Dammasch led the group in a cheerful and efficient exercise session after the meal, clearing their minds for the subsequent interactive Q&A session: 'Who knows about this stuff?', where the speakers could be peppered with questions on all Alpha-1 topics.
As always, one of the most anticipated presentations concerns the topic of research. Professor Eberhardt presented the ongoing studies and offered hope that some of them are progressing very well.
The very interesting conclusion was given by Prof. Franziska Trudzinski, Senior Consultant of the Department of Pneumology and Respiratory Medicine at the Thorax Clinic Heidelberg. She presented the important EARCO registry and provided insights into the international Alpha-1 community.
Professor Eberhardt and his team organized a very successful patient day for the second time, which, in addition to high-quality specialist information, also allowed ample time for discussion. His wish for an informative, empowering, and inspiring day was perfectly fulfilled for me. Thank you for that.
