{"id":6142,"date":"2024-05-24T16:38:24","date_gmt":"2024-05-24T14:38:24","guid":{"rendered":"https:\/\/alpha1-deutschland.org\/?p=6142"},"modified":"2025-04-23T17:25:16","modified_gmt":"2025-04-23T15:25:16","slug":"2-kemptener-alpha1-patiententag","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/2-kemptener-alpha1-patiententag","title":{"rendered":"2nd Kempten Alpha1 Patient Day: Exchange and Information"},"content":{"rendered":"<div id=\"fws_6a8f2cdd70d91\"  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 style=\"font-weight: 400;\"><strong>Dr.-Ing. Heinz Stutzenberger, as published in <a href=\"https:\/\/alpha1-deutschland.org\/en\/alpha1-journal\/\">Alpha1 Journal 1-2024<\/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>The 2nd Kempten Alpha1 Patient Day took place on June 8, 2024, organized by Prof. Dr. Christian Schumann of the Allg\u00e4u Clinic Network, together with Alpha1-Deutschland eV and with the generous support of CSL Behring. The conference venue was once again the excellently suited conference hotel next to the Kempten Clinic, located in a former monastery.<\/p>\n<p>During the introduction of the approximately 20 guests, it became clear that many different forms of alpha-1 antitrypsin deficiency were represented. What all those affected had in common was that the time between the onset of the first symptoms and the final diagnosis was far too long, lasting 20 years in the most extreme case.<\/p>\n<p>Professor Schumann presented the lung clinics within the Allg\u00e4u network, which employ seven additional pulmonologists across three locations. The clinic in Kempten has been an Alpha-1 Center since 2015 and is qualified to enroll patients in the European Alpha-1 Registry EARCO. It also serves as a center for rare diseases, listed in the SE Atlas and on Orphanet (the network for rare diseases).<\/p>\n<p>With the patient&#039;s consent and in their presence, Professor Schumann described a specific case from his clinical practice. Following this, I gave a presentation on &quot;helping people to help themselves,&quot; focusing on aspects that patients can influence, such as lifestyle, knowledge about their illness, insights gained through studies, and political advocacy. The importance of seeking allies on a personal level, within associations, and even at the European umbrella organization was emphasized.<\/p>\n<p>Dr. Andreas Wagner from the Alpcura Specialist Clinic Allg\u00e4u, a rehabilitation clinic for pulmonology and psychosomatic medicine in Pfronten, then provided an overview of the clinical presentations associated with alpha-1 antitrypsin deficiency. In addition to the physical disorders, mental distress, ranging from mild symptoms to anxiety disorders and depression, is also a significant component, and its treatment can be part of comprehensive rehabilitation measures. Besides professional therapy options (individual or group sessions), Dr. Wagner emphasized the importance of preventing social isolation and stressed that the social services department is available to provide further support during the transition from rehabilitation back to everyday life.<\/p>\n<p>Michaela Frisch from the Lung Exercise Working Group gave a presentation on the topic of pulmonary exercise, convincingly outlining its benefits for the health of people with lung diseases. She emphasized that, in addition to exercise under professional guidance, everyday-life-oriented training plays a crucial role, utilizing daily routines to improve physical fitness (e.g., taking the stairs instead of the elevator). But it wasn&#039;t just calls for more physical activity: two exercise sessions were held, which not only contributed to the health benefits but also to the enjoyment and good spirits of all participants.<\/p>\n<p>The final presentation was given by Dr. Susanne M\u00f6ller and Walter Hiller from CSL Behring on the topic of home self-administration. Instead of presenting the relevant aspects using numerous slides, they gave practical demonstrations of self-administration on a plastic arm that realistically simulates the behavior of the injection needle when inserted into a vein. Several participants were able to experience this firsthand by practicing on the dummy arm. While this wasn&#039;t always successful on the first attempt under the watchful eyes of the audience, repeated attempts under expert guidance ultimately led to success.<\/p>\n<p>Overall, this patient day in Kempten was once again a resounding success, characterized by an intensive exchange among all participants, where fun was also had. A continuation of the event series is planned: the next one is scheduled for June 14, 2025, again at the Hotel St. Raphael in Kempten.<\/p>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t<div id=\"fws_6a8f2cdd72ca7\"  data-column-margin=\"default\" data-midnight=\"dark\" data-top-percent=\"5%\"  class=\"wpb_row vc_row-fluid vc_row\"  style=\"padding-top: calc(100vw * 0.05); 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-2 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\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n\n\t<div  class=\"vc_col-sm-8 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=\"img-with-aniamtion-wrap\" data-max-width=\"100%\" data-max-width-mobile=\"default\" data-shadow=\"none\" data-animation=\"none\" >\n      <div class=\"inner\">\n        <div class=\"hover-wrap\"> \n          <div class=\"hover-wrap-inner\">\n            <img loading=\"lazy\" decoding=\"async\" class=\"img-with-animation skip-lazy\" data-delay=\"0\" height=\"438\" width=\"862\" data-animation=\"none\" src=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Patiententag-Kempten.jpg\" alt=\"Impression vom Patiententag in Kempten 2024 am Stand von Alpha1\" srcset=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Patiententag-Kempten.jpg 862w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Patiententag-Kempten-300x152.jpg 300w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Patiententag-Kempten-768x390.jpg 768w\" sizes=\"auto, (max-width: 862px) 100vw, 862px\" \/>\n          <\/div>\n        <\/div>\n        \n      <\/div>\n    <\/div><div class=\"divider-wrap\" data-alignment=\"default\"><div style=\"height: 20px;\" class=\"divider\"><\/div><\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p><em>Image: The participants of the 2nd Alpha-1 Patient Day in Kempten, from left: Dr. Susanne M\u00f6ller (CSL Behring), Dr.-Ing. Heinz Stutzenberger (Alpha1 Deutschland eV), Prof. Dr. Christian Schumann (Klinikverbund Allg\u00e4u), Walter Hiller (CSL Behring Care), Michaela Frisch (AG Lungensport), Dr. Andreas Wagner (Alpcura Fachklinik Allg\u00e4u).<\/em><\/p>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n\n\t<div  class=\"vc_col-sm-2 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\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"Author: Dr.-Ing. Heinz Stutzenberger, as published in Alpha1 Journal 1-2024. The 2nd Kempten Alpha1 Patient Day took place on June 8, 2024, organized by Prof. Dr. Christian Schumann of the Allg\u00e4u Clinic Network, together with...","protected":false},"author":1,"featured_media":3619,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1,24,74],"tags":[],"class_list":["post-6142","post","type-post","status-publish","format-standard","has-post-thumbnail","category-allgemein","category-alpha1-journal","category-veranstaltungsberichte"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>2. 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