2nd South German Alpha-1 Antitrypsin Patient Day
On September 23, 2023, the South German Patient Day took place in Stuttgart, and the rooms of the Sparkassenakademie were bursting at the seams with almost 150 participants. Both patients and their relatives took advantage of the opportunity to obtain high-quality information, meet new "alphas" (patients with liver disease), or see old acquaintances and exchange experiences. The tireless and friendly team led by Professor Pavel Strnad from RWTH Aachen University had once again converted two event rooms into examination rooms. Liver and lung examinations had been conducted non-stop since the previous day. In fact, all appointments were completely booked! A huge thank you and much appreciation goes to the entire team at RWTH Aachen University.
Following the information session for physicians on Friday evening, the patient day began early Saturday morning at 9:00 a.m. with a warm welcome from Marion Wilkens (Alpha1 Germany e.V.) and Dr. Alexander Rupp (Pulmonology Practice at the PiZ Stuttgart Center, Alpha1 Center), who once again played a key role in organizing the event. Reliable and perfect support in planning and execution was provided by Ms. Melanie Hopf (WK Continuing Education); she was, once again, the event's guardian angel.
Many exciting and important presentations followed. Professor Greulich from Marburg, for example, spoke about what actually characterizes rare genotypes, what such a diagnosis means for the course of the disease and therapy, and how it is possible to detect such rare genotypes more frequently through increasingly better examination methods.
Marion Wilkens and Heike Isensee (from the Stuttgart region self-help group) spoke about the purpose and activities of the patient organization and the regional self-help groups. There are many aspects that make regional and supra-regional group work meaningful and important.
Dr. Psoma from the Robert Bosch Hospital in Stuttgart reported on the treatments that are common or possible for COPD and pulmonary emphysema. Among other things, she explained the combinations of different medications, the frequently occurring additional illnesses (so-called comorbidities), and how to manage exacerbations.
Dr. Rupp's presentation on asthma and allergies once again highlighted the complexity of treatment and, above all, diagnosis for those of us with lung diseases. Careful listening, appropriate examinations, and sometimes even questioning previous diagnoses – there is much to consider on the path to the correct diagnosis and subsequent therapy.
Dr. Fromme from RWTH Aachen University reported on the possible liver changes in Alpha1, and on the risk of liver disease depending on genotype, lifestyle (e.g., alcohol consumption), and other risk factors. The primary measurement of liver stiffness is also important for prognosis. A lot of interesting information about an organ we don't feel at all…
Ms. Leitl from the Schön Clinic in Berchtesgaden addressed the topic of our physical activity – ideally, we should walk at least 7,000 steps a day. She explained the effects of various training methods and how the different muscle fiber types in our bodies react to exercise. Whether using an app, at the gym, at home, or outdoors – the exercise should be regular and enjoyable.
Mr. Köbler, a psychotherapist from Fürth, posed the question for his workshop: how are the family members actually doing, what challenges and burdens do they face in everyday life, and what resources make it easier to cope? Interest and participation were very high, and time was too short – perhaps there will be a follow-up next year?
Dr. Heinemann from Stuttgart is a specialist in, among other things, vaccinations, and he had prepared a wonderful "roadmap" for us lung patients, outlining which vaccinations are important for us. He explained very clearly how the vaccines work and encouraged everyone present to take another look at their vaccination records and to ask their family doctor about any missing vaccinations.
Finally, Eveline Skarek presented her program on the topic of "Simply Breathe - Simply Sing." She allowed the participants to experience how the correct posture and exhalation lead to inhalation happening "by itself," and how the subsequent humming and singing of tones and songs allows the breath to flow and lifts the spirits.
As you can see – lots of completely different information in a single day!
During the breaks, participants had the opportunity to exchange ideas, gather information at the pharmaceutical industry booths, learn more at the Alpha1 Germany booth, or simply refresh themselves.
All of this was made possible financially by the pharmaceutical companies present. Their employees on site were, as always, helpful, friendly, and available to answer any questions. Many thanks to Grifols Germany, CSL Behring, GSK, AstraZeneca, and Sanofi-Aventis Germany for the fantastic opportunity to hold such an event.
A huge thank you to Dr. Alexander Rupp, the initiator of this event. What began many years ago on a small scale in his own practice has now become a major Alpha1 event, attracting patients who sometimes travel long distances. Thanks also to the other organizers – we are all already looking forward to the next South German Patient Day in Stuttgart on September 28, 2024.
Dr. Heike Isensee
