SHG Cologne: First Alpha1 group meeting on March 11, 2017
Author
Barbara Pixa and Bernd Dobbert
The first group meeting took place on March 11, 2017, at the community center in Cologne-Ehrenfeld. The community center has rooms of varying sizes, and we (Barbara Pixa and I) rented one of the smaller rooms, which accommodates 20 people.
Because there was great interest and also some (still) non-members present, the hall was almost bursting at the seams.
Over cold and warm drinks and two delicious homemade cakes, a lively exchange quickly developed between the individual participants.
After the initial exchange, the group leader informed the members about further plans for this year and also asked about the particular interests of each member.
The following possible activities were therefore proposed for the next meetings:
- Breathing Techniques and Lung Exercises (Peter Kukry)
- Demonstration of the correct use of Flutter and Cornet (possibly at Ruhrland Clinic Essen)
- Invitation from an ecotrophologist for nutritional counseling
- Fibro-Scan only for Cologne members (University Hospital Aachen)
- Invitation from the responsible medical professionals for the planned new Alpha1 centers in North Rhine-Westphalia
- Possible screening of a film about the production of Prolastin
- A children's event combined with an afternoon of cooking
- Creating a semi-annual newsletter with special topics (e.g. Eurordis and initiatives to promote medical centers for rare diseases such as Alpha1)
The sales representatives from Grifols and CLS-Behring, Ms. Tina Patrias and Mr. Peter Lipka, who were also present, then answered individual questions and proposed an event for our Cologne members, to be jointly sponsored by both companies. This offer was gladly accepted.
The highlight and conclusion of the event was the presentation by Dr. Karim Hamesch from Aachen University Hospital on the effects of alpha-1 antithyroid deficiency on the liver. Dr. Hamesch very clearly explained the additional diagnostic options available at the university hospital. Aachen has recently become a European center of excellence for alpha-1 liver diseases, and due to its proximity to Cologne, a special examination appointment for our Cologne members will soon be offered at the Cologne-Merheim Clinic.
Overall, it was a very intensive and stimulating event, for which we have already received a great deal of positive feedback. The next event is on June 10, 2017 have received.
Barbara Pixa and Bernd Dobbert
