Author
Marion Wilkens, as appeared in Alpha1 Journal 1-2024.
The team at Aachen University Hospital, led by Prof. Strnad, began conducting investigations for the liver study early on. Everything was perfectly organized, the atmosphere was excellent, and so even the blood draws were almost enjoyable.
During the lunch break, there were presentations on alpha-1 antitrypsin deficiency. First, Dr. Judith Smith, senior physician at the Clinic for Pneumology and Internal Intensive Care Medicine in Aachen, spoke on the topic of "Lung involvement in alpha-1 antitrypsin deficiency: what can be detected in lung function tests?" We all hold a lung function test in our hands so often and wonder each time, "What does it all mean?" Using various examples, Dr. Smith clearly explained how a lung function test works and how to interpret the results.
This was followed by a presentation by Dr. Malin Fromme, resident physician at the Clinic for Gastroenterology, Metabolic Diseases and Internal Intensive Care Medicine, study physician on the topic of „Alpha 1 and the Liver: Secrets of Liver Involvement from Aachen“, and subsequently, Univ.-Prof. Dr. Pavel Strnad, senior consultant at the Clinic for Gastroenterology, Metabolic Diseases and Internal Intensive Care Medicine, study director, scientific and advisory board member of Alpha1 Germany eV, spoke about „Alpha 1 and Clinical Trials – What’s Happening and How Do New Drugs Get to Market?“.
After receiving so much information, I then had the opportunity to explain: "Why do I need a patient organization? Alpha1-Germany introduces itself.".
The lecture session was rounded off by Ms. Kathrin Thiele, certified instructor for rehabilitation and recreational sports, with her presentation "The main thing is pulmonary exercise – stay active!" While she led us through some wonderful exercises, she also explained: "Who, where and for how long can I apply for rehabilitation sports? All the information about rehabilitation locations and how I can make my everyday life more active, which exercises are good and how long they should be performed to help me increase my strength, endurance, coordination and mobility to improve my quality of life."„
With over 50 liver examinations and a wealth of information, it was another very successful patient day. Information was also provided by the companies Grifols and CSL Behring, and of course by us. This time, our booth was staffed by Henry Wilkens, who was extremely busy after I had previously encouraged everyone in my presentation to take informational materials for their own doctors, as this helps to keep our condition in the public consciousness.
The patient day was also a success because several patients were identified who were previously unaware of their liver remodeling. Of course, these patients aren't simply sent home; the team in Aachen ensures the best possible treatment and offers comprehensive support. We'll be there again next summer when the question is: Liver check-up?
