{"id":5892,"date":"2021-09-30T13:05:41","date_gmt":"2021-09-30T11:05:41","guid":{"rendered":"https:\/\/alpha1-deutschland.org\/?p=5892"},"modified":"2024-02-08T13:28:32","modified_gmt":"2024-02-08T12:28:32","slug":"ein-neuer-digitaler-weg-mit-der-virtuellen-shg-leber","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/ein-neuer-digitaler-weg-mit-der-virtuellen-shg-leber","title":{"rendered":"A new digital approach with the virtual liver support group"},"content":{"rendered":"<div id=\"fws_6a8c4eb59ee16\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row full-width-section\"  style=\"padding-top: 0px; padding-bottom: 0px; \"><div class=\"row-bg-wrap\" data-bg-animation=\"none\" data-bg-animation-delay=\"\" data-bg-overlay=\"false\"><div class=\"inner-wrap row-bg-layer\" ><div class=\"row-bg viewport-desktop\"  style=\"\"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 dark left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding inherit_tablet inherit_phone\"  data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t<div class=\"vc_separator wpb_content_element vc_separator_align_center vc_sep_width_100 vc_sep_border_width_5 vc_sep_pos_align_center vc_sep_color_grey wpb_content_element vc_separator-has-text\" ><span class=\"vc_sep_holder vc_sep_holder_l\"><span class=\"vc_sep_line\"><\/span><\/span><h4>Author<\/h4><span class=\"vc_sep_holder vc_sep_holder_r\"><span class=\"vc_sep_line\"><\/span><\/span>\n<\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p><strong>Linda Tietz, Alpha1 Germany eV, as published in\u00a0<a href=\"https:\/\/alpha1-deutschland.org\/en\/alpha1-journal\/\">Alpha1 Journal 2\/2021<\/a>.<\/strong><\/p>\n<\/div>\n\n\n\n<div class=\"divider-wrap\" data-alignment=\"default\"><div style=\"margin-top: 25px; height: 5px; margin-bottom: 25px;\" data-width=\"100%\" data-animate=\"\" data-animation-delay=\"\" data-color=\"default\" class=\"divider-border\"><\/div><\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p>An interview by Linda Tietz with our new group leader of the SHG Leber, Thomas Winckler<\/p>\n<p>Linda Tietz: Hello Thomas, before I begin with my first questions, I would like to thank you on behalf of the board and the advisory council for your commitment to our patient organization! We are very pleased that you will be joining the Alpha1 Germany team as the new group leader of the Liver Self-Help Group and will be adding a new virtual highlight to our digital Alpha1 world. What exactly is planned? What is the origin of the idea, and how can our members practically envision it?<\/p>\n<p>Thomas Winckler: Hello Linda, that&#039;s a lot of questions at once, which I&#039;d be happy to answer one by one. But first, thank you for the trust you&#039;ve placed in me. To briefly explain what can&#039;t really be said briefly: 1. Alpha-1 antitrypsin deficiency (AATD) is a very specific form of liver disease. A crucial enzyme is not produced in sufficient quantities to perform its functions due to a genetic defect. 2. AATD always originates in the liver, even though symptoms often manifest in the lungs. 3. The liver is a highly complex organ with a multitude of functions for the body. The Liver Support Group aims to provide information and shed light on the often-obscure aspects of liver health. We want to highlight therapies and studies and present new therapeutic approaches and practical tips.<\/p>\n<p>Linda Tietz: How often will the virtual self-help group meet, and is a real-life meeting planned for the future?<\/p>\n<p>Thomas Winckler: The challenge was to find a way to reach those affected nationwide. Therefore, the self-help group meets virtually twice a year. My wish is that, despite the virtual format, the meetings remain as lively as possible.<br \/>\nThis means we gather questions and information, review studies, and speak with experts. This information and these tips will then be shared online. In addition, there will of course be in-person meetings at the annual conferences. Everything else will develop organically.<\/p>\n<p>Linda Tietz: That sounds very exciting! It&#039;s good to know that you&#039;ll also be a supporter and contact person for liver-related issues in the real Alpha1 world, whether at events, conferences, or in-person support group meetings. May I ask how you came to focus specifically on the liver? Are you also affected by AATD? What phenotype do you have? Thomas Winckler: I was diagnosed with Pi*ZZ in 2018. Before the diagnosis, I only had unusually high liver enzyme levels that couldn&#039;t be explained. With the diagnosis, they became clear. Before the diagnosis, I had shortness of breath during exertion; after the diagnosis, I have actual pulmonary emphysema. Since I originally come from a medical background, meaning I&#039;m trained and educated in matters of &quot;disease,&quot; my interest grew in gaining more information, in a deeper understanding of what&#039;s happening in my liver and lungs. Why things happen the way they do, and of course, whether and what can be done to maintain or even improve quality of life. To be honest, that&#039;s what drew me in. Through my contact with the University Hospital Aachen (UKA), and especially with Prof. Strnad and his team, I have the opportunity to meet with true experts in liver and AATM and receive sound information.<\/p>\n<p>Linda Tietz: Have you personally had any experience with the studies on liver involvement in Alpha-1 disease patients conducted by the Aachen University Hospital since 2015?<\/p>\n<p>Thomas Winckler: Yes, I have participated in studies at the UKA since 2018 and am currently in a phase II drug study for the treatment of liver fibrosis.<\/p>\n<p>Linda Tietz: How did you first come into contact with our patient organization? And when was that?<\/p>\n<p>Thomas Winckler: My wife advised me to join the Alpha1 Association, which she had discovered online, immediately after my diagnosis. She wanted information and support.<br \/>\nTo receive support, to meet other sufferers, and to see how they cope with AATD. To learn what AATD does to you and what treatment options are available. And today I can only say that it was a good and right decision.<\/p>\n<p>Linda Tietz: How do you live outside the virtual space and your work at Alpha1? Do you have time for a hobby?<\/p>\n<p>Thomas Winckler: I work as a freelance psychotherapist and coach, and I give training courses for medical personnel in hospitals, institutions, and nursing services. As a hobby, I&#039;ve been making music for many years, both solo and in bands.<\/p>\n<p>Linda Tietz: To conclude our conversation, would you tell me which goals and ideas are particularly important to you in your work with associations or self-help groups?<\/p>\n<p>Thomas Winckler: I would be very pleased if we could offer information to AATM sufferers through the self-help group, information that supports them with their own questions and helps them further. If we succeed in creating a vibrant foundation, a trusting environment, and even a bit of fun, then we are on the right track.<\/p>\n<p>Linda Tietz: Thank you so much, dear Thomas, for this interesting interview with you!<\/p>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"Author Linda Tietz, Alpha1 Germany e.V., as published in the Alpha1 Journal 2\/2021. An interview by Linda Tietz with our new group leader of the Leber self-help group, Thomas Winckler. 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