{"id":37198,"date":"2022-05-09T16:46:31","date_gmt":"2022-05-09T20:46:31","guid":{"rendered":"https:\/\/wfh.org\/health-issues-in-women-and-girls-affected-by-hemophilia\/"},"modified":"2024-04-11T08:43:15","modified_gmt":"2024-04-11T12:43:15","slug":"health-issues-in-women-and-girls-affected-by-hemophilia","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/health-issues-in-women-and-girls-affected-by-hemophilia\/","title":{"rendered":"Health issues in women and girls affected by hemophilia"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"37198\" class=\"elementor elementor-37198 elementor-36931\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-4d637f6 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"4d637f6\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-6a36f2c\" data-id=\"6a36f2c\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-55ec9ee elementor-widget elementor-widget-text-editor\" data-id=\"55ec9ee\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 25-07-2024 *\/\n.elementor-widget-text-editor.elementor-drop-cap-view-stacked .elementor-drop-cap{background-color:#69727d;color:#fff}.elementor-widget-text-editor.elementor-drop-cap-view-framed .elementor-drop-cap{color:#69727d;border:3px solid;background-color:transparent}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap{margin-top:8px}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap-letter{width:1em;height:1em}.elementor-widget-text-editor .elementor-drop-cap{float:left;text-align:center;line-height:1;font-size:50px}.elementor-widget-text-editor .elementor-drop-cap-letter{display:inline-block}<\/style>\t\t\t\t<p>Robert Sidonio Jr., Pediatric Hematologist at Aflac Cancer and Blood Disorders, U.S.A. gave a talk called, \u201cNomenclature for women with hemophilia\/hemophilia carriers\u201d. He said that about 1 out of every 5 people with mild hemophilia are female, and that hemophilia carriers have an increased clinically relevant bleeding tendency. The kinds of bleeding that one can expect to see in carriers are related to tooth extraction, surgery, delivery, hemarthrosis, menorrhagia, and epistaxis.\u00a0<\/p>\n<p>Angela Wayand, Assistant Professor at the Department of Pediatrics, University of Michigan, U.S.A, covered heavy menstrual bleeding (HMB) and iron deficiency in her presentation \u201cMenstrual bleeding &#8211; iron deficiency\u201d. She said that heavy menstrual bleeding is common in women and girls with hemophilia (WGH). HMB is associated with significant negative effects on quality of life. Iron deficiency with and without anemia is common in those with HMB. Optimal treatment requires menstrual suppression as well as iron repletion. He proposes new terminology to improve communication. The terminology and conceptual framework would be for the categorization of hemophilia A\/B carriers accounting for personal bleeding history, genetic determinants and baseline factor level which will ultimately improve communication. He also recommends a focus on trial designs that accommodate those with mild hemophilia; the development of trials that allow women of reproductive age to participate easier; the development of tools using X-linked chromosome inactivation testing to predict levels and bleeding; and large-scale natural history studies with genotype, phenotype and QOL data.<\/p>\n<p>\u201cJoint health\u201d was delivered by Michelle Sholzberg, Assistant Professor at the Department of Medicine at Unity Health Toronto, St. Michael\u2019s Hospital, Canada. She began by saying that carriers classically have been thought to have limited (if any) bleeding symptoms. However, hemophilia carriers have higher bleeding scores compared to age-matched controls. They also have decreased joint range of motion compared to normal controls, evidence of structural damage in joints, and are at greater risk of low bone mineral density (BMD) and osteoporosis. In terms of understanding the lived experiences and exploring barriers to care, Sholzberg said that WGH feel like they are not being taken seriously and have a negative impression of the healthcare system. She went on to say that given recent evidence of musculoskeletal bleeding in women with and carriers of hemophilia, it is hypothesized that they may also be at risk for poor bone health. Sholzberg finished by stating that future approaches to better understand musculoskeletal health in women with\u2014and carriers of\u2014hemophilia should revolve around building the evidence and international collaboration.<\/p>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6dce8c9 elementor-widget elementor-widget-spacer\" data-id=\"6dce8c9\" data-element_type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 25-07-2024 *\/\n.elementor-column .elementor-spacer-inner{height:var(--spacer-size)}.e-con{--container-widget-width:100%}.e-con-inner>.elementor-widget-spacer,.e-con>.elementor-widget-spacer{width:var(--container-widget-width,var(--spacer-size));--align-self:var(--container-widget-align-self,initial);--flex-shrink:0}.e-con-inner>.elementor-widget-spacer>.elementor-widget-container,.e-con>.elementor-widget-spacer>.elementor-widget-container{height:100%;width:100%}.e-con-inner>.elementor-widget-spacer>.elementor-widget-container>.elementor-spacer,.e-con>.elementor-widget-spacer>.elementor-widget-container>.elementor-spacer{height:100%}.e-con-inner>.elementor-widget-spacer>.elementor-widget-container>.elementor-spacer>.elementor-spacer-inner,.e-con>.elementor-widget-spacer>.elementor-widget-container>.elementor-spacer>.elementor-spacer-inner{height:var(--container-widget-height,var(--spacer-size))}.e-con-inner>.elementor-widget-spacer.elementor-widget-empty,.e-con>.elementor-widget-spacer.elementor-widget-empty{position:relative;min-height:22px;min-width:22px}.e-con-inner>.elementor-widget-spacer.elementor-widget-empty .elementor-widget-empty-icon,.e-con>.elementor-widget-spacer.elementor-widget-empty .elementor-widget-empty-icon{position:absolute;top:0;bottom:0;left:0;right:0;margin:auto;padding:0;width:22px;height:22px}<\/style>\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-0285c8f elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"0285c8f\" data-element_type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;gradient&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-21a9d93\" data-id=\"21a9d93\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-52aa1ae elementor-widget elementor-widget-heading\" data-id=\"52aa1ae\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 25-07-2024 *\/\n.elementor-heading-title{padding:0;margin:0;line-height:1}.elementor-widget-heading .elementor-heading-title[class*=elementor-size-]>a{color:inherit;font-size:inherit;line-height:inherit}.elementor-widget-heading .elementor-heading-title.elementor-size-small{font-size:15px}.elementor-widget-heading .elementor-heading-title.elementor-size-medium{font-size:19px}.elementor-widget-heading .elementor-heading-title.elementor-size-large{font-size:29px}.elementor-widget-heading .elementor-heading-title.elementor-size-xl{font-size:39px}.elementor-widget-heading .elementor-heading-title.elementor-size-xxl{font-size:59px}<\/style><h3 class=\"elementor-heading-title elementor-size-default\">WFH 2022 World Congress<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-af9423b elementor-widget elementor-widget-heading\" data-id=\"af9423b\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<span class=\"elementor-heading-title elementor-size-default\">May 8 to 11, 2022<\/span>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-4bb07b6 elementor-widget elementor-widget-spacer\" data-id=\"4bb07b6\" data-element_type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-19d3b5f elementor-widget elementor-widget-text-editor\" data-id=\"19d3b5f\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p><a href=\"https:\/\/congress.wfh.org\/registration\/register-now\/\" target=\"_blank\" rel=\"noopener noreferrer\"><strong>Register now!<\/strong><\/a><\/p>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>The session, \u201cHealth issues in women and girls affected by hemophilia with a focus on nomenclature, heavy menstrual bleeding, and musculoskeletal issues\u201d was held today at the WFH 2022 World Congress in Montreal, Canada. Chaired by Roseline d\u2019Oiron, Director at the Reference Centre for Haemophilia and Congenital Bleeding Disorders, University Paris Saclay, Paris, France, the event covered how women and girls are affected by hemophilia, and how hemophilia carriers are at risk of bleeding symptoms that may go unrecognized, including heavy menstrual bleeding (HMB) and musculoskeletal bleeding. <\/p>\n","protected":false},"author":3,"featured_media":37155,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[187],"tags":[],"search-category":[85],"class_list":["post-37198","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-congres-mondiale-de-la-fmh","search-category-article"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v23.4 (Yoast SEO v23.4) - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Health issues in women and girls affected by hemophilia | FMH - F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/wfh.org\/fr\/article\/health-issues-in-women-and-girls-affected-by-hemophilia\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Health issues in women and girls affected by hemophilia\" \/>\n<meta property=\"og:description\" content=\"The session, \u201cHealth issues in women and girls affected by hemophilia with a focus on nomenclature, heavy menstrual bleeding, and musculoskeletal issues\u201d was held today at the WFH 2022 World Congress in Montreal, Canada. Chaired by Roseline d\u2019Oiron, Director at the Reference Centre for Haemophilia and Congenital Bleeding Disorders, University Paris Saclay, Paris, France, the event covered how women and girls are affected by hemophilia, and how hemophilia carriers are at risk of bleeding symptoms that may go unrecognized, including heavy menstrual bleeding (HMB) and musculoskeletal bleeding.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/fr\/article\/health-issues-in-women-and-girls-affected-by-hemophilia\/\" \/>\n<meta property=\"og:site_name\" content=\"FMH - F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/wfhemophilia\/\" \/>\n<meta property=\"article:published_time\" content=\"2022-05-09T20:46:31+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-04-11T12:43:15+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/05\/news-health-issues-women-girls-may9.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"700\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Electra Rozakis\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Electra Rozakis\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/wfh.org\/fr\/article\/health-issues-in-women-and-girls-affected-by-hemophilia\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/health-issues-in-women-and-girls-affected-by-hemophilia\/\"},\"author\":{\"name\":\"Electra Rozakis\",\"@id\":\"https:\/\/wfh.org\/fr\/#\/schema\/person\/590cf0d3a057aaef67b154adeffbf31d\"},\"headline\":\"Health issues in women and girls affected by hemophilia\",\"datePublished\":\"2022-05-09T20:46:31+00:00\",\"dateModified\":\"2024-04-11T12:43:15+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/health-issues-in-women-and-girls-affected-by-hemophilia\/\"},\"wordCount\":433,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/fr\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/health-issues-in-women-and-girls-affected-by-hemophilia\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/05\/news-health-issues-women-girls-may9.jpg\",\"articleSection\":[\"Congr\u00e8s mondiale de la FMH\"],\"inLanguage\":\"fr-FR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/wfh.org\/fr\/article\/health-issues-in-women-and-girls-affected-by-hemophilia\/\",\"url\":\"https:\/\/wfh.org\/fr\/article\/health-issues-in-women-and-girls-affected-by-hemophilia\/\",\"name\":\"Health issues in women and girls affected by hemophilia | FMH - 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