Author
Marion Wilkens, Alpha1 Germany eV, as published in Alpha1 Journal 2/2022.
Report from the 1st Alpha-1 Patient Day in Heidelberg
On Saturday, September 24th, CSL Behring hosted the first Alpha-1 Patient Day in Heidelberg in cooperation with the local Thorax Clinic and Alpha1 Deutschland eV.
We used this day to introduce the new self-help group Rhein-Neckar-Odenwald. Carsten Büch, the new group leader, introduced himself and his medical history and spoke about his plans for possible future meetings in the region. He shared his thoughts with energy and emotion, and you could practically feel how committed and motivated he is to the task. He rightly emphasizes the importance of physical activity, which is encouraged to play a role in his group meetings, as well as a lively exchange of all the little tips that make everyday life easier.
If you are interested, please feel free to contact him; his contact details, like those of all group leaders, can be found on our homepage.
In addition to the club presentation and the SHG RNO, other speakers also had their say.
Dr. Trudzinski, who is very committed to our disease and clearly interested in the work at the Alpha1 Center Heidelberg, took us all on a journey from diagnosis to treatment. She gave an interactive presentation, frequently checking our knowledge and incorporating our experiences. Since Heidelberg was the first center to register patients in EARCO and plans to register many more, we also discussed the European registry.
The subsequent lecture by Dr. Theissig, entitled "Why should I, as a patient, participate in a study?", fit in well with this theme.
She explained the different stages of a study to us, including the risks and benefits, and described how things are done in Heidelberg. This alleviated our fears that we were just "guinea pigs." Incidentally, that's precisely what she doesn't want to hear, and therefore she goes to great lengths to properly inform us patients, even if it sometimes takes longer.
Appropriately for the time of year and the first rainy days, Dr. Maria Ada Presotto then gave us tips on "How to get fit for winter." The title might suggest exercise and nutrition, but the focus was on vaccinations, which are especially important for us Alphas. This includes getting the flu shot every year and also being vaccinated against pneumococcus and COVID-19. She explained the STIKO (Standing Committee on Vaccination) recommendations in detail and asked us all to check at home whether our vaccination records include all the mentioned vaccinations. If you are unsure, simply ask your doctor.
During the snack break, we had a lively exchange and all agreed: This very successful patient day will continue…
