Author
Heike Isensee, as published in Alpha1 Journal 2/2024.
On September 28th, the time had come again: Dr. Alexander Rupp (Pulmonology Practice in the City Center, Stuttgart) hosted the South German Patient Day at the Stuttgart Savings Bank Academy. Over 140 participants attended. The day before, the team from RWTH Aachen University, led by Prof. Pavel Strnad, was already working flat out to conduct the numerous examinations related to the liver study. After the information session for physicians on Friday evening, an information program for patients was offered throughout Saturday. And, of course, countless patients were examined that day as well. We also had the opportunity to get answers to any questions we might have at the booths of the pharmaceutical companies and at the Alpha1 Germany booth.
Following the morning welcome by Dr. Rupp and Marion Wilkens (Chairwoman of Alpha1 Germany), Ms. Wilkens seamlessly transitioned to reporting on the work of the patient organization at the national and international levels. Dr. Heike Isensee also joined her on the podium to introduce herself, the regional self-help group (SHG Region Stuttgart), and their work throughout Baden-Württemberg.
Dr. Rupp then gave a presentation on the topic of "Asthma, COPD, Emphysema – the many facets of Alpha-1 in the lungs," and many in the audience gained a better understanding of why they are prescribed a particular therapy or medication. During the subsequent coffee break, the attendees agreed that one should never think they have already heard or know everything about a topic. The presentation provided new insights.
After the break, Professor Pavel Strnad from Aachen University Hospital spoke about the liver and Alpha1, and about new research and approaches to treating liver damage caused by Alpha1. It's reassuring to know that research is continuing, as this offers hope. Following this, Marion Wilkens explained why we need a European patient registry and what benefits we can gain from it. Her presentation on the EARCO study likely prompted some attendees to consider participating.
The lunch break was, as in previous years, perfectly organized. I would like to commend the staff of the Sparkassen Academy – everyone was friendly, the catering was excellent, and the facilities were well-ventilated, clean, and welcoming. Refreshed and energized after lunch, we continued with the next presentation.
Dr. Psoma from the Robert Bosch Hospital in Stuttgart gave an update on oxygen therapy and non-invasive ventilation (NIV) for patients with COPD and emphysema. Afterwards, pulmonary exercise trainer Peter Kukry, himself an oxygen-dependent patient with Alpha-1 pulmonary disease, took the stage to re-energize the tired audience. All attendees were invited to leave their seats to put the theory of pulmonary exercise into practice with exercises that stretched and moved the entire body.
After the final coffee break, there was a concluding discussion with Dr. Rupp. The question was what the diagnosis means for each individual, and who should actually be tested and when. Many different personal accounts were shared, and very few patients had positive experiences to report. The conclusion was that, unfortunately, there are still far too many gaps in knowledge about Alpha-1 and the correct therapy among too many doctors, and communication problems between doctors and patients are common.
It is all the more gratifying that Dr. Rupp has once again organized such a wonderful patient day for us Alphas and our families, and that we have such a competent Alpha1 Center here in Stuttgart. We received highly interesting information, the opportunity for on-site liver examinations, time and space for good conversations with other affected individuals and for expanding our network – all in such a pleasant atmosphere. This is a great gift for us. Thank you so much! Thanks also go to Ms. Hopf, who once again acted as our "fairy godmother" of organization, as well as to the pharmaceutical companies whose generous donations made the entire event possible. We are already looking forward to the 4th South German Patient Day in Stuttgart on October 18, 2025.
