{"id":28349,"date":"2019-02-21T00:00:00","date_gmt":"2019-02-21T05:00:00","guid":{"rendered":"https:\/\/www.hydroassoc.org\/you-spoke-we-wrote\/"},"modified":"2024-10-14T12:03:31","modified_gmt":"2024-10-14T16:03:31","slug":"you-spoke-we-wrote","status":"publish","type":"post","link":"https:\/\/www.hydroassoc.org\/you-spoke-we-wrote\/","title":{"rendered":"You spoke! We wrote!"},"content":{"rendered":"\r\n<p>A huge\u00a0<strong>Thank You\u00a0<\/strong>to the 82 individuals who responded to a question we posted on social media back on October 30, 2017! A research group at the University of Pittsburgh Medical Center analyzed your responses and wrote a paper summarizing the results.\u00a0<\/p>\r\n\r\n\r\n\r\n<p>The question was, \u201cAs an adult, what signs and symptoms do you experience that are related to your hydrocephalus and how does hydrocephalus impact your daily life?\u201d<\/p>\r\n\r\n\r\n\r\n<p>So what did we learn? It may not surprise you.\u00a0<\/p>\r\n\r\n\r\n\r\n<ul class=\"wp-block-list\">\r\n<li>381 signs and symptoms were reported that were not directly related to treatment failure<\/li>\r\n<li>63% reported headache<\/li>\r\n<li>45% reported cognitive deficits<\/li>\r\n<li>40% reported mobility issues (dizziness, balance, or gait problems)<\/li>\r\n<\/ul>\r\n\r\n\r\n\r\n<p>An additional finding was that half of the individuals reporting a headache also reported hypersensitivity to external stimuli. This has been largely neglected in the research literature!<\/p>\r\n\r\n\r\n\r\n<p>Why is this type of information important? Publishing\u00a0<strong>your experience<\/strong>\u00a0in peer-reviewed medical journals increases recognition of these concerns by the wider medical community. It can also help shape future clinical research by prioritizing outcomes measures that impact our community on a daily or ongoing basis.\u00a0<\/p>\r\n\r\n\r\n\r\n<p>To read the study\u00a0<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/30321673\" target=\"_blank\" rel=\"noopener\">Click Here\u00a0<\/a><\/p>\r\n\r\n\r\n\r\n<p><iframe loading=\"lazy\" style=\"border: none; overflow: hidden;\" src=\"https:\/\/www.facebook.com\/plugins\/post.php?href=https%3A%2F%2Fwww.facebook.com%2FHydroAssoc%2Fposts%2F10154996036351546&amp;width=500\" width=\"500\" height=\"524\" frameborder=\"0\" scrolling=\"no\"><\/iframe><\/p>\r\n\r\n            <div id=\"daexthefup-container\"\r\n                 class=\"daexthefup-container daexthefup-layout-stacked daexthefup-alignment-center\"\r\n                 data-post-id=\"28349\">\r\n\r\n                <div class=\"daexthefup-feedback\">\r\n                    <div class=\"daexthefup-text\">\r\n                        <h3 class=\"daexthefup-title\">Was this resource helpful?<\/h3>\r\n                    <\/div>\r\n                    <div class=\"daexthefup-buttons-container\">\r\n                        <div class=\"daexthefup-buttons\">\r\n\t\t\t\t\t\t\t\r\n            <div class=\"daexthefup-yes daexthefup-button daexthefup-button-type-text\" data-value=\"1\">\r\n                <div class=\"daexthefup-button-text\">Yes<\/div>\r\n            <\/div>\r\n\r\n\t\t\t\t\t\t\t\t\t\t\r\n            <div class=\"daexthefup-no daexthefup-button daexthefup-button-type-text\" data-value=\"0\">\r\n                <div class=\"daexthefup-button-text\">No<\/div>\r\n            <\/div>\r\n\r\n\t\t\t                        <\/div>\r\n                    <\/div>\r\n                <\/div>\r\n\r\n                <div class=\"daexthefup-comment\">\r\n                    <div class=\"daexthefup-comment-top-container\">\r\n                        <label id=\"daexthefup-comment-label\" class=\"daexthefup-comment-label\"><\/label>\r\n\t\t\t\t\t\t                            <div class=\"daexthefup-comment-character-counter-container\">\r\n                                <div id=\"daexthefup-comment-character-counter-number\"\r\n                                     class=\"daexthefup-comment-character-counter-number\"><\/div>\r\n                                <div class=\"daexthefup-comment-character-counter-text\"><\/div>\r\n                            <\/div>\r\n\t\t\t\t\t\t                    <\/div>\r\n                    <textarea id=\"daexthefup-comment-textarea\" class=\"daexthefup-comment-textarea\"\r\n                              placeholder=\"Type your message\"\r\n                              maxlength=\"400\"><\/textarea>\r\n                    <div class=\"daexthefup-comment-buttons-container\">\r\n                        <button class=\"daexthefup-comment-submit daexthefup-button\">Submit<\/button>\r\n                        <button class=\"daexthefup-comment-cancel daexthefup-button\">Cancel<\/button>\r\n                    <\/div>\r\n                <\/div>\r\n\r\n                <div class=\"daexthefup-successful-submission-text\">Thanks for your feedback!<\/div>\r\n\r\n            <\/div>\r\n\r\n\t\t\t","protected":false},"excerpt":{"rendered":"<p>In October 2017, 82 individuals responded to a question we posed on social media about how hydrocephalus impacts their daily life. Researchers at the University of Pittsburgh Medical Center analyzed their responses in a new paper.<\/p>\n","protected":false},"author":14,"featured_media":28215,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_helpful_pro_status":1,"_searchwp_excluded":"","inline_featured_image":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[32,40,1207],"tags":[1221],"post_folder":[],"class_list":["post-28349","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ha-blog","category-research-updates","category-resources","tag-research-updates"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.hydroassoc.org\/wp-content\/uploads\/2021\/03\/Ft.Image_Research.png","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/www.hydroassoc.org\/wp-json\/wp\/v2\/posts\/28349","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.hydroassoc.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.hydroassoc.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.hydroassoc.org\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.hydroassoc.org\/wp-json\/wp\/v2\/comments?post=28349"}],"version-history":[{"count":0,"href":"https:\/\/www.hydroassoc.org\/wp-json\/wp\/v2\/posts\/28349\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.hydroassoc.org\/wp-json\/wp\/v2\/media\/28215"}],"wp:attachment":[{"href":"https:\/\/www.hydroassoc.org\/wp-json\/wp\/v2\/media?parent=28349"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.hydroassoc.org\/wp-json\/wp\/v2\/categories?post=28349"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.hydroassoc.org\/wp-json\/wp\/v2\/tags?post=28349"},{"taxonomy":"post_folder","embeddable":true,"href":"https:\/\/www.hydroassoc.org\/wp-json\/wp\/v2\/post_folder?post=28349"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}