Brief report on Alpha1 patient day, Thorax Clinic Heidelberg, March 4, 2023

Dr.-Ing. Heinz Stutzenberger, as published in Alpha1 Journal 1/2023.

On February 4, 2023, the 2nd Alpha1 Patient Day took place at the Thorax Clinic Heidelberg, organized by Privatdozentin Dr. Franziska Trudzinski, together with the head of the SHG Region Rhein-Neckar-Odenwald, Carsten Büch, and thankfully sponsored by the companies CSL Behring and Grifols.

Dr. Trudzinski gave the first presentation on the topic of "Imaging Diagnostics in Pulmonary Emphysema," the most common complication of alpha-1 antitrypsin deficiency (AATD). Computed tomography (CT) has become the established diagnostic tool for pulmonary emphysema, allowing for significantly better localization and delineation than older methods. CT is considered a prerequisite for any surgical interventions, which were subsequently discussed by Prof. Dr. Felix Herth, Head of the Thorax Clinic at Heidelberg University Hospital. Various methods are available to reduce the size of the damaged lung areas, but these must be individually tailored to each patient and are usually not without side effects.

Subsequently, Dr. Dieter Kaufmann, a private lecturer, gave a presentation on genetic aspects of AATM, which is caused by the mutation of a single one of several billion base pairs on a specific gene of the human genome, and which leads to a change in the alpha1-antitrypsin molecule, which consists of approximately 400 amino acids.

The final presentation of the day was given by Marion Wilkens, chairwoman of our association, on the question of what AATM patients want in connection with their illness and what they can do themselves. For those affected by a rare disease, which AATM is, it is important to actively engage with the disease and, in addition to their own medical reports and lab results that accumulate over time, to use all other possible sources of information, including exchanging experiences with other AATM patients.

To conclude the official part of the event, Dr. Oswinde Bock-Hensley offered a guided tour of the Tuberculosis Museum located in the event building. In addition to the official agenda, there were opportunities for networking among participants and with representatives of the sponsors CSL Behring and Grifols during the breaks and at the concluding luncheon.

The participants agreed that the 2nd Alpha1 Patient Day was a resounding success and that the series should be continued. Carsten Büch, co-organizer of the event and head of the Rhine-Neckar-Odenwald self-help group, concluded by thanking all the speakers for their presentations, Dr. Trudzinski for the organization, all the clinic staff who contributed to the event's success, and of course, the sponsors. He thanked everyone for their strong attendance. He also announced plans to establish in-person meetings for "his" self-help group once he has secured a suitable venue.