{"id":1675,"date":"2017-06-30T12:23:06","date_gmt":"2017-06-30T10:23:06","guid":{"rendered":"http:\/\/www.alpha1-deutschland.org\/?p=1675"},"modified":"2020-03-10T15:33:22","modified_gmt":"2020-03-10T14:33:22","slug":"patientenveranstaltung-der-firma-csl-behring-shg-rhein-main-nahe-war-dabei","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/patientenveranstaltung-der-firma-csl-behring-shg-rhein-main-nahe-war-dabei","title":{"rendered":"Patient event hosted by CSL Behring \u2013 SHG Rhein-Main-Nahe was present"},"content":{"rendered":"<div id=\"fws_6adac03c87809\"  data-column-margin=\"default\" data-midnight=\"dark\" data-top-percent=\"3%\"  class=\"wpb_row vc_row-fluid vc_row full-width-section\"  style=\"padding-top: calc(100vw * 0.03); 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\"  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<div class=\"wpb_text_column wpb_content_element\" >\n\t<header class=\"cmsms_post_header entry-header\">\n<h1 class=\"cmsms_post_title entry-title\"><span style=\"color: #004267;\">Patient event hosted by CSL Behring \u2013 SHG Rhein-Main-Nahe was present<\/span><\/h1>\n<\/header>\n<\/div>\n\n\n\n<div class=\"divider-wrap\" data-alignment=\"default\"><div style=\"height: 50px;\" class=\"divider\"><\/div><\/div><div class=\"vc_separator wpb_content_element vc_separator_align_center vc_sep_border_width_5 vc_sep_pos_align_center wpb_content_element vc_separator-has-text\"   style=\"width: 100%;\"><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<div class=\"cmsms_post_content entry-content\">\n<div id=\"cmsms_row_5e6649d2bdf6a\" class=\"cmsms_row cmsms_color_scheme_default\">\n<div class=\"cmsms_row_outer_parent\">\n<div class=\"cmsms_row_outer\">\n<div class=\"cmsms_row_inner\">\n<div class=\"cmsms_row_margin cmsms_11\">\n<div class=\"cmsms_column one_first\">\n<div class=\"cmsms_text fadeInUp animated\" data-animation=\"fadeInUp\" data-delay=\"0\">\n<p><strong>Herbert Rude<\/strong><\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<footer class=\"cmsms_post_footer entry-meta\"><\/footer>\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>Patient event hosted by CSL Behring with Nicole Scherhag, Saulheim, and Dr. Ulrich Steinhauser, Sinsheim, and many members of the self-help group Rhein-Main-Nahe were present.<\/p>\n<p>There were many excellent presentations, the content of which we have brought back for you:<\/p>\n<p>Chronic illnesses and the psyche \u2013 \u201eConsider what advice you would give a good friend\u201c<\/p>\n<p>\u201eFear often follows diagnosis,\u201c said social worker Nicole Scherhag at a recent patient event hosted by CSL Behring. Scherhag heads the training center for health promotion and skills development in Saulheim, advises patients and their families, and conducts research on psychosocial care concepts for the chronically ill. \u201eThe fear following a diagnosis is multifaceted,\u201c she said. She referred to the fear of the consequences of the illness, its progression, possibly even death, the fear of social isolation, and, particularly relevant to us Alphas, the fear of heredity and the fear of shortness of breath.<\/p>\n<p>Other unpleasant feelings arise, such as envy, shame, anger, and frustration, as Scherhag explains. These feelings are inextricably linked. Scherhag recounts the story of a patient in need of assistance who always reacts irritably and even with outbursts of anger to offers of help. &quot;He&#039;s actually just trying to mask his shame at being dependent on others,&quot; she says.<\/p>\n<p>Shame as a reaction to a medical diagnosis is deeply rooted in our society, partly because illnesses are judged by society; AIDS, for example, ranks very low on this scale. These judgments, therefore, fatally trigger feelings of guilt in those affected. This negative spiral must be broken.<\/p>\n<h2><span style=\"color: #004267;\">There are no general recommendations.<\/span><\/h2>\n<p>\u201e&quot;The unpleasant feelings only dissipate when those affected accept their illness and consciously address the associated problems,&quot; she says. According to her findings, quality of life and well-being then return. There are no general recommendations, however, as every person is different, Scherhag says. Everyone has to find their own way of coping with the illness.<\/p>\n<p>Self-care is crucial: &quot;Think about what makes you feel good and what you enjoy. And consider what advice you would give a good friend in your situation,&quot; she says. Depending on the outcome, patients should then decide how they can stay active and find distractions.<\/p>\n<p>And she adds: &quot;Seek out supportive people to talk to.&quot; These could be family members, but they don&#039;t have to be. What&#039;s important are people\u2014not necessarily partners\u2014with whom you can talk about your thoughts and feelings, and also about coping with the illness. There are also good resources available from professionals, and for example, from church communities with their counseling services.<\/p>\n<p>The family environment is always important for another reason, however: \u201cWhen you\u2019re sick, you\u2019re somehow alone, but not really,\u201e says Scherhag. She refers to a woman who was bombarded with phone calls during her husband\u2019s hospital stay: \u201cAlways the same question: \u2018How is he?\u2019 and never the question: \u2018How are you coping?\u2019\u201d the woman complained. But one must recognize that the life and future plans of partners are often just as threatened as those of the sick person, says Scherhag.<\/p>\n<h2><span style=\"color: #004267;\">Dr. Steinhauser: The substitution is effective<\/span><\/h2>\n<p>\u201eStarting therapy as early as possible can significantly reduce mortality,\u201c said Dr. Ulrich Steinhauer from the Alpha-1 Center in Sinsheim, who presented the second part of the event. He noted that it was regrettable that six to eight years still passed after the first symptoms appeared before a diagnosis of alpha-1 antitrypsin deficiency was made. Without treatment, lung function steadily declines. With an FEV1 below 50, there are significant limitations during physical exertion, and with an FEV1 below 30 to 40, even at rest.<\/p>\n<p>Treatment is becoming increasingly promising: According to Steinhauser, there are ever better medications available for inhalation sprays. These inhibit the destruction of alveoli by elastases and granulocytes.<\/p>\n<p>\u201eAnd the substitution therapy works,\u201c he continues. Lung function deteriorates significantly more slowly with substitution than without, as a recent study has shown. This likely means that the life expectancy of Alpha-1 patients receiving substitution therapy is no longer significantly affected.<\/p>\n<p>He was more reserved in his comments regarding other forms of therapy. &quot;Surgical lung reduction is no longer used due to a lack of success,&quot; he said. And treatment with valves or coils only makes sense if the patients are suitable candidates. For example, they must not have collateral ventilation to be treated with valves.<\/p>\n<p>Herbert Rude<\/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":"Patient event hosted by CSL Behring \u2013 SHG Rhein-Main-Nahe was present. Author: Herbert Rude. Patient event hosted by CSL Behring with Nicole Scherhag, Saulheim, and Dr. Ulrich Steinhauser, Sinsheim, and many members...","protected":false},"author":1,"featured_media":3638,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[23],"tags":[],"class_list":["post-1675","post","type-post","status-publish","format-standard","has-post-thumbnail","category-shg-rhein-main-nahe"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Patientenveranstaltung CSL Behring - SHG Rhein-Main-Nahe war dabei<\/title>\n<meta name=\"description\" content=\"Die wichtigsten psychologischen Ergebnisse der Versammlung zusammengefasst in Alltagstipps al\u00e1 \u201e\u00dcberlegen Sie, was Sie einem guten Freund raten w\u00fcrden\u201c.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/alpha1-deutschland.org\/en\/patientenveranstaltung-der-firma-csl-behring-shg-rhein-main-nahe-war-dabei\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Patientenveranstaltung CSL Behring - SHG Rhein-Main-Nahe war dabei\" \/>\n<meta property=\"og:description\" content=\"Die wichtigsten psychologischen Ergebnisse der Versammlung zusammengefasst in Alltagstipps al\u00e1 \u201e\u00dcberlegen Sie, was Sie einem guten Freund raten w\u00fcrden\u201c.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/alpha1-deutschland.org\/en\/patientenveranstaltung-der-firma-csl-behring-shg-rhein-main-nahe-war-dabei\/\" \/>\n<meta property=\"og:site_name\" content=\"Ihr Online Portal f\u00fcr Mitglieder und Interessierte\" \/>\n<meta property=\"article:published_time\" content=\"2017-06-30T10:23:06+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2020-03-10T14:33:22+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Vortrag.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1920\" \/>\n\t<meta property=\"og:image:height\" content=\"1080\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Redaktion Alpha1 Deutschland e.V.\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Redaktion Alpha1 Deutschland e.V.\" \/>\n\t<meta name=\"twitter:label2\" content=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"4 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/alpha1-deutschland.org\\\/patientenveranstaltung-der-firma-csl-behring-shg-rhein-main-nahe-war-dabei#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/alpha1-deutschland.org\\\/patientenveranstaltung-der-firma-csl-behring-shg-rhein-main-nahe-war-dabei\"},\"author\":{\"name\":\"Redaktion Alpha1 Deutschland e.V.\",\"@id\":\"https:\\\/\\\/alpha1-deutschland.org\\\/#\\\/schema\\\/person\\\/bbeaebe048b6117849fb55f50616d631\"},\"headline\":\"Patientenveranstaltung der Firma CSL Behring &#8211; 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