2nd Kempten Alpha1 Patient Day: Exchange and Information

Dr.-Ing. Heinz Stutzenberger, as published in Alpha1 Journal 1-2024.

The 2nd Kempten Alpha1 Patient Day took place on June 8, 2024, organized by Prof. Dr. Christian Schumann of the Allgäu Clinic Network, together with Alpha1-Deutschland eV and with the generous support of CSL Behring. The conference venue was once again the excellently suited conference hotel next to the Kempten Clinic, located in a former monastery.

During the introduction of the approximately 20 guests, it became clear that many different forms of alpha-1 antitrypsin deficiency were represented. What all those affected had in common was that the time between the onset of the first symptoms and the final diagnosis was far too long, lasting 20 years in the most extreme case.

Professor Schumann presented the lung clinics within the Allgäu network, which employ seven additional pulmonologists across three locations. The clinic in Kempten has been an Alpha-1 Center since 2015 and is qualified to enroll patients in the European Alpha-1 Registry EARCO. It also serves as a center for rare diseases, listed in the SE Atlas and on Orphanet (the network for rare diseases).

With the patient's consent and in their presence, Professor Schumann described a specific case from his clinical practice. Following this, I gave a presentation on "helping people to help themselves," focusing on aspects that patients can influence, such as lifestyle, knowledge about their illness, insights gained through studies, and political advocacy. The importance of seeking allies on a personal level, within associations, and even at the European umbrella organization was emphasized.

Dr. Andreas Wagner from the Alpcura Specialist Clinic Allgäu, a rehabilitation clinic for pulmonology and psychosomatic medicine in Pfronten, then provided an overview of the clinical presentations associated with alpha-1 antitrypsin deficiency. In addition to the physical disorders, mental distress, ranging from mild symptoms to anxiety disorders and depression, is also a significant component, and its treatment can be part of comprehensive rehabilitation measures. Besides professional therapy options (individual or group sessions), Dr. Wagner emphasized the importance of preventing social isolation and stressed that the social services department is available to provide further support during the transition from rehabilitation back to everyday life.

Michaela Frisch from the Lung Exercise Working Group gave a presentation on the topic of pulmonary exercise, convincingly outlining its benefits for the health of people with lung diseases. She emphasized that, in addition to exercise under professional guidance, everyday-life-oriented training plays a crucial role, utilizing daily routines to improve physical fitness (e.g., taking the stairs instead of the elevator). But it wasn't just calls for more physical activity: two exercise sessions were held, which not only contributed to the health benefits but also to the enjoyment and good spirits of all participants.

The final presentation was given by Dr. Susanne Möller and Walter Hiller from CSL Behring on the topic of home self-administration. Instead of presenting the relevant aspects using numerous slides, they gave practical demonstrations of self-administration on a plastic arm that realistically simulates the behavior of the injection needle when inserted into a vein. Several participants were able to experience this firsthand by practicing on the dummy arm. While this wasn't always successful on the first attempt under the watchful eyes of the audience, repeated attempts under expert guidance ultimately led to success.

Overall, this patient day in Kempten was once again a resounding success, characterized by an intensive exchange among all participants, where fun was also had. A continuation of the event series is planned: the next one is scheduled for June 14, 2025, again at the Hotel St. Raphael in Kempten.