1st Kempten Alpha1 Patient Day
The 26th German Lung Day on September 30, 2023, featured a premiere: the 1st Kempten Alpha1 Patient Day, organized by Prof. Dr. Schumann from the Allgäu Clinic Network, together with Alpha1-Deutschland eV and generously supported by CSL Behring. The conference venue was a superbly equipped conference hotel, housed in a former monastery.
At the beginning, Professor Schumann welcomed the guests and introduced the Alpha1 Center in Kempten. Following this, Dr. Stutzenberger, the second chairman of Alpha1 Germany, also welcomed the guests, extending a particularly warm welcome to Renate Shashoua, chairwoman of the Alpha1 Switzerland association, who, along with him and other colleagues, is driving the establishment of the Alpha1 Europe Alliance. She was passing through and had with her the founding charter, which she had signed. This charter was then also signed on behalf of Alpha1 Germany and subsequently sent by mail to Belgium. This activity, aimed at fostering intensive international exchange, was just one of the many approaches presented by Alpha1 Germany in pursuing one of its most important goals: empowering those affected to become knowledgeable about their condition.
In the following presentation, Professor Schumann discussed the lung-related clinical picture of alpha-1 antitrypsin deficiency in detail, describing the clinical symptoms of affected individuals and illustrating these with anonymized findings from everyday clinical practice. He also presented the relationships between genotype, serum levels, and the risk of lung and liver damage, and explained possible therapies and supportive changes in patient behavior. Through skillful moderation, he ensured that the attendees shared their experiences with all these aspects and exchanged information with one another.
Dr. Wagner then presented the Alpcura Specialist Clinic Allgäu in Pfronten, which, in addition to pulmonary rehabilitation, also operates a psychosomatic rehabilitation department. This combination can be particularly beneficial for individuals with chronic obstructive pulmonary disease (COPD), especially those with alpha levels (Alpha), who often have to cope with the associated worries and anxieties due to the disease's onset at a young age. The pulmonary rehabilitation program can be specifically tailored to individuals with Alpha levels, although their number per year is significantly lower than that of typical COPD patients. One of the participants gave very positive feedback about his experience during a rehabilitation stay in Pfronten, the goal of which is to empower individuals to manage their condition effectively upon completion of the program.
The central point of the subsequent discussion was how individuals with alpha levels can find a suitable rehabilitation clinic, as, for example, an internet search using relevant keywords yields only three results. Unfortunately, there is no self-organization like the Alpha1 Centers, and a recommendation register within the association would likely lead to legal problems. Therefore, the current best approach remains the exchange of information among those affected, for which patient days provide a good platform (but it is worthwhile considering alternatives, some of which are already in development).
In the final presentation of the day, Professor Strnad discussed the liver-related aspects of alpha-1 antitrypsin deficiency. This was particularly important as some participants were unaware of the liver involvement, despite having received augmentation therapy for years. The presentation of future treatment methods for the liver-related aspects generated considerable interest, even though their availability is still some way off.
Following his presentation, Professor Strnad had to answer questions from several participants who had been informed of the opportunity for highly competent consultation during registration and had arrived with their complete medical records. After a delay of almost an hour, due to the intensive discussions and professionally managed by the hotel staff, the event moved on to lunch, where it concluded with continued lively discussions.
Overall, this patient day in Kempten was a thoroughly successful premiere, characterized by a special liveliness, which, from the participants' point of view, should definitely be continued.
Dr. Heinz Stutzenberger
Pictured are the speakers (from left to right): our 2nd Chairman Dr. Heinz Stutzenberger, Prof. Dr. Pavel Strnad from the University Hospital Aachen, Prof. Dr. Schumann from the Allgäu Clinic Network and Dr. Wagner from the Alpcura Specialist Clinic Allgäu.
