- Alpha1 Patient Day in Kempten in the Allgäu
On July 19, 2025, CSL Behring hosted the 3rd Alpha1 Antitrypsin Deficiency Patient Day at the Hotel St. Raphael in Kempten, and I was fortunate enough to attend. The event was well-attended, the program promising, the speakers top-notch, and the venue left nothing to be desired.
Right at the beginning, Professor Schumann, Head of Pulmonology at the Allgäu Clinic Network, presented the treatment options for Alpha1 patients in the Allgäu region. We learned that the clinic in Kempten – an Alpha1 Center since 2015 – collaborates with Wangen. Mindelheim and Immenstadt are also additional centers where affected individuals can seek help. This information is also helpful when planning a vacation in the Allgäu!
The common thread running through the entire event was the question of how much of a difference it makes whether one is a woman or a man suffering from Alpha1.
In the following presentation by Professor Trudzinski (Heidelberg Thoracic Clinic), who joined online from her vacation, the question of which gender-specific differences can be identified using an Alpha1 registry was addressed. Recommendations for appropriate therapy can only be made when large datasets are available. This is particularly true for rare mutations. As we learned, for example, women experience illness differently, have different inflammatory patterns, different risk factors, different comorbidities, possibly different (occupational) environmental stressors, and more frequent exacerbations than men. Much research is still needed to develop therapies that are "appropriate" for both men and women.
For a short fitness session, it was Michaela Frisch's turn with a round of lung exercises. Coordination, flexibility, and strength were required, and the brain was challenged just as much as the muscles.
Dr. Niederwald, a gastroenterologist at the clinic in Kempten, spoke about liver stiffness. She explained the method used to measure liver stiffness at her clinic. Something new and important for me to remember: before the liver stiffness measurement, you should not only be fasting but also rest for at least 15 minutes – so don't rush to your appointment! We learned a lot about potential liver damage and the differences between liver fibrosis and cirrhosis. The discussion again focused on the differences between men and women. Unfortunately, hormonal changes during menopause can lead to fatty liver disease in women, completely independent of their diet. We women present all agreed that this is extremely unfair!
Professor Schumann then gave a lecture on lung volume reduction using various types of valves. He explained the anatomy of the lungs as well as the important measurements taken during pulmonary function tests. The Kempten Pulmonology Clinic is a pulmonary emphysema center, so patients there are in excellent hands.
Michaela Frisch also spoke about pulmonary rehabilitation, which should be much more than "just" exercise. Everyday movements should be practiced, relaxation techniques learned, and respiratory muscle strength improved. Fall prevention, endurance, and coordination are important components. The use of respiratory training devices should also be practiced – all tailored to the individual health condition of each participant.
Marion Wilkens concluded by sharing her story – and that's something all of us affected by this condition should do. We should all collect our data and share information about our illness, even if only within our personal circles. Because data can save lives. The better we can inform doctors about the course of our illness, the better we can be treated. And the more data collected in a registry, such as the EARCO study, the more successful the treatment of Alpha-1 can be in the future. Therefore, Ms. Wilkens also concluded her remarks at this event by urging patients to participate in studies like the EARCO study and to take part in (reputable) surveys.
A highly informative event concluded with a late lunch together. Many thanks to CSL Behring for making this patient day possible, to the team at the Kempten clinic, and to everyone involved. I'm already looking forward to next year's event.
Heike Isensee
