The SHG region of Trier introduces itself

Wolfgang Schneider, as appeared in Alpha1 Journal 1/2025.

Our first patient day was an AlphaCare regional event, supported by the company Grifols, in cooperation with Alpha1 Germany. It took place at the Park-Plaza Hotel in downtown Trier. Several affected individuals attended with their relatives, a total of approximately 15 to 17 people. Dr. Simonetti, a member of Grifols' medical department, provided excellent and helpful information about the disease. Marion Wilkens, the chairwoman of Alpha1 Germany, spoke about the importance of support groups. Afterwards, there was an opportunity to ask questions and engage in conversation.

Around 2010, I started attending information sessions organized by Alpha1 Germany, first in Cologne, then others in Mainz and Heidelberg. I was surprised that hardly anyone from the Trier area was there. This piqued my curiosity, as I figured there must be more people affected by this in the region.

I also contacted the self-help contact point (SEKIS) in Trier. They support the formation of self-help groups, among other things by listing groups on their website and providing meeting rooms.

People diagnosed with Alpha-1 often feel alone with the whole issue after their diagnosis. They have to painstakingly gather information themselves. While doctors do provide some information, they still have to do a lot of research on their own. Every participant confirmed this experience.

The group is intended for the greater Trier area, the Eifel region, and the Hunsrück region, encompassing a large part of Rhineland-Palatinate, Saarland, and southern North Rhine-Westphalia. The nearest support groups are located in Cologne, Mainz, and Heidelberg. Someone from Hamburg also attended the first meeting; they were there for an examination at the University Hospital Aachen and were able to combine it with our appointment.

The goal is to hold regular meetings and expand the range of topics. For example, I could imagine a future focus on the "effects of Alpha-1 on the liver" or on the topic of oxygen. And of course, we want to attract more affected individuals and interested people from the region to the group.

We are planning another meeting for 2025, likely in the fall (or at the latest, early 2026). You will find the date in the Alpha1 Germany event calendar in due course, or you can send me an email and I will send you the invitation directly.