{"id":7295,"date":"2026-09-02T10:42:37","date_gmt":"2026-09-02T08:42:37","guid":{"rendered":"https:\/\/alpha1-deutschland.org\/?p=7295"},"modified":"2026-09-22T13:51:33","modified_gmt":"2026-09-22T11:51:33","slug":"ann-kathrin-siegel-geschichte","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/ann-kathrin-siegel-geschichte","title":{"rendered":"What the abyss teaches us about life"},"content":{"rendered":"<div id=\"fws_6ab42e1080a1e\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row full-width-section\"  style=\"padding-top: 0px; padding-bottom: 50px; \"><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 flex_gap_desktop_10px\"  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>Annkatrin Siegl, as appeared in <a href=\"https:\/\/alpha1-deutschland.org\/en\/alpha1-journal\/\">Alpha1 Journal 1\/2026<\/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><blockquote class=\"nectar_single_testimonial\" tabindex=\"0\" data-color=\"default\" data-style=\"small_modern\"><div class=\"inner\"data-custom-color=\"true\" style=\"color: #004267;\"> <p><span class=\"open-quote\">\u201d<\/span>\u201eMaster, I have fallen into the abyss,\u201c he said. \u201eThe water is dark and deep.\u201c \u201eDon\u2019t forget one thing,\u201c the master replied, \u201eyou don\u2019t drown because you dive underwater, but because you stay underwater.\u201c And the warrior used all his strength to free himself from his predicament.  <\/p><span class=\"wrap\"><span>Paulo Coelho (The Manual of the Warrior of Light)<\/span><\/span><\/div><\/blockquote><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>Until early 2024, no one in my family had ever heard of alpha-1 antitrypsin deficiency: neither its symptoms, nor its treatment, nor whether it could be fatal. However, I vividly remember the day my parents called to tell me my mother&#039;s diagnosis. I was sitting at my desk in my room in London, the city I had moved to in January 2016 to pursue my master&#039;s degree, when my father mentioned that I, too, needed to be tested, as it was a genetic condition.<\/p>\n<p>Although the focus remained on my mother and the significance of this diagnosis, after we hung up, I, like so many who hear about AATM for the first time, googled it. Initially, I didn&#039;t understand a word of what I read, mainly because emotions were still running high and, having spent over half my life watching &quot;Grey&#039;s Anatomy&quot; for years, I had apparently acquired no competence in understanding medical terminology.<\/p>\n<p>One of the first pieces of information I came across concerned the life expectancy of people diagnosed with AATD, and I had to hold my breath when I read: &quot;40 years for smokers and 65 years for non-smokers.&quot; Smoking was never an issue for my mother, as evidenced by the fact that her lungs were in excellent condition. It was her liver that became a problem for her, and unfortunately, the life expectancy estimate was spot on, as she was only 64 when she passed away in March 2025 after several AATD-related complications. In retrospect, this also means that we only had about a year to learn as much as possible about AATD. While there&#039;s no reason to point fingers or assign blame, it&#039;s quite clear that an earlier diagnosis could have made all the difference.<\/p>\n<p>While my own AATM test in London was quick, easy, and free\u2014unlike the bureaucratic hurdles my brother faced in Germany\u2014it brought home to me once again how technology can be both a blessing and a curse. In London, the doctors didn&#039;t even call; they sent me the result via a health app. Looking back on the months between her diagnosis and her death, I&#039;m grateful that they were filled with love, laughter, and community as much as possible. Although I spent most of my time in London, the distance allowed me to cherish the time I spent with family and friends when I did see them. We didn&#039;t know that our trip to Italy in August 2024 for one of my friends&#039; weddings would be our last holiday together, but I couldn&#039;t be more grateful to have brought my parents along. And for that same friend to eventually travel to our hometown a few months later to attend my mother&#039;s funeral was the epitome of true friendship.<\/p>\n<p>The thing is, when your mother is diagnosed with a rare genetic disorder and dies 15 months later, it doesn&#039;t just change your perspective on life and how fragile it can be, but also your perspective on the people around you\u2014making you reconsider who deserves to be a part of your life and who doesn&#039;t. Sadly, we seem to live in societies, whether in the UK or Germany, where grief is still taboo for many because it&#039;s seen as the ultimate proof that life has and will end. Of course, we spend a lot of time thinking about the future: what will happen, what do we want to happen, what do we want it to look like? In doing so, we project our wildest hopes and greatest fears onto tomorrow. No matter what plans we make, reality will certainly turn out differently. But just like the warrior in the dark water, we learn that the danger isn&#039;t in falling into the abyss, but in being pulled down by it.<\/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_6ab42e10823a5\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row\"  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 flex_gap_desktop_10px\"  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=\"divider-wrap\" data-alignment=\"center\"><div style=\"margin-top: 25px; width: 20%; height: 2px; margin-bottom: 25px;\" data-width=\"20%\" data-animate=\"\" data-animation-delay=\"\" data-color=\"accent-color\" class=\"divider-small-border\"><\/div><\/div><div class=\"img-with-aniamtion-wrap center\" 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=\"822\" width=\"1254\" data-animation=\"none\" src=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Patientin-Geschichte-Superhelden-Illustration-1.jpg\" alt=\"Superhelden Illustration\" srcset=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Patientin-Geschichte-Superhelden-Illustration-1.jpg 1254w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Patientin-Geschichte-Superhelden-Illustration-1-300x197.jpg 300w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Patientin-Geschichte-Superhelden-Illustration-1-1024x671.jpg 1024w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Patientin-Geschichte-Superhelden-Illustration-1-768x503.jpg 768w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Patientin-Geschichte-Superhelden-Illustration-1-18x12.jpg 18w\" sizes=\"auto, (max-width: 1254px) 100vw, 1254px\" \/>\n          <\/div>\n        <\/div>\n        \n      <\/div>\n    <\/div>\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t<div id=\"fws_6ab42e1083c34\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row\"  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 flex_gap_desktop_10px\"  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=\"divider-wrap\" data-alignment=\"center\"><div style=\"margin-top: 25px; width: 20%; height: 2px; margin-bottom: 25px;\" data-width=\"20%\" data-animate=\"\" data-animation-delay=\"\" data-color=\"accent-color\" class=\"divider-small-border\"><\/div><\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p style=\"text-align: center;\"><span style=\"color: #004368;\">Annkatrin and her father shared this moving story at the Alpha1 information day. The association sincerely thanks them both for their openness and courage in sharing their personal experiences.<\/span><\/p>\n<\/div>\n\n\n\n<div class=\"divider-wrap\" data-alignment=\"center\"><div style=\"margin-top: 25px; width: 20%; height: 2px; margin-bottom: 25px;\" data-width=\"20%\" data-animate=\"\" data-animation-delay=\"\" data-color=\"accent-color\" class=\"divider-small-border\"><\/div><\/div>\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"AutorIn Annkatrin Siegl, so erschienen im Alpha1-Journal 1\/2026. &#8221;\u201eMeister, ich bin in den Abgrund gefallen\u201c, sagte er. \u201eDas Wasser ist dunkel und tief.\u201c \u201eVergiss eines nicht\u201c, gibt der Meister zur...","protected":false},"author":1,"featured_media":7297,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1,24,36],"tags":[],"class_list":["post-7295","post","type-post","status-publish","format-standard","has-post-thumbnail","category-allgemein","category-alpha1-journal","category-alphas-fuer-alphas"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Was uns der Abgrund \u00fcber das Leben lehrt<\/title>\n<meta name=\"description\" content=\"Eine pers\u00f6nliche Geschichte \u00fcber Alpha-1-Antitrypsin-Mangel, sp\u00e4te Diagnose, Verlust und den bewussten Blick auf Leben von Ann-Kathrin Siegel\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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