Self-help group meeting Berlin-Brandenburg on May 20, 2016

SHG Berlin-Brandenburg

Liver study expert on site and "craft session" with Michael Geflitter

Following the recent members' meeting in Bremen and the liver study, we invited Mr. Martin Wenzel, who works at the liver outpatient clinic of the Department of Gastroenterology at Charité Campus Benjamin Franklin (Berlin-Steglitz), to our meeting. Thirteen members of our group participated in the liver study. Mr. Wenzel provided us with further information on the entire liver study in connection with Alpha-1. Many questions arose regarding the liver study and the MRI examination, such as the duration of the examination, data protection, and who receives the examination results. Mr. Wenzel informed us that Dr. Reiter is the contact person for the elastographic measurements in the MRI and that all questions can be directed to him. Mr. Wenzel has since sent information about outpatient care via email, and Dr. Reiter has also emailed us to suggest appointment times for the MRI examination. The first examinations, which take approximately 20 to 25 minutes, have been underway since the beginning of June.

A highlight of the day was the "crafting session" with our Michael Geflitter. Several group members were very interested in modifying their nasal prosthesis so that it could be attached to regular glasses. While some opticians offer this conversion, Michael Geflitter has developed his own method – interesting and easy to use. Materials needed: a pair of glasses (preferably round), an old and a new nasal prosthesis, 4-5 cm of copper wire (not alloyed), scissors, and hot water. From the old nasal prosthesis, cut 10 small pieces from the back end of the tubing (the thickest part) to serve as loops. Thread four loops onto the temple of the glasses, and attach one loop to the nose pad. Remove the nose pad, attach the loop, and then reattach the nose pad on both sides. Cut off the thick section at the front of the new nasal prosthesis. Insert the copper wire into the two resulting front ends of the tubing and twist them together with pliers or your fingers to form a loop. Then, place the two ends in hot water for a few minutes. Use pliers to remove the copper wire, leaving the necessary nose prongs on both sides. You can then cut these to the correct length. As a final step, pull the homemade nose prongs through the loops attached to the glasses (over the temples and nose pads). The nose prongs, with their curved ends, slide easily through the loops and retain their shape. Over time, the new nose prongs will harden. After a cold, they need to be replaced. They are not silicone tubes that can be boiled. It was another fun session, and our next meeting is in August.