{"id":14221,"date":"2025-07-04T14:32:59","date_gmt":"2025-07-04T14:32:59","guid":{"rendered":"https:\/\/blogemergencias.es\/index.php\/2025\/07\/04\/una-exposicion-fotografica-visibiliza-la-hemoglobinuria-paroxistica-nocturna-enfermedad-rara-que-causa-trombos\/"},"modified":"2025-07-04T14:32:59","modified_gmt":"2025-07-04T14:32:59","slug":"una-exposicion-fotografica-visibiliza-la-hemoglobinuria-paroxistica-nocturna-enfermedad-rara-que-causa-trombos","status":"publish","type":"post","link":"https:\/\/blogemergencias.es\/index.php\/2025\/07\/04\/una-exposicion-fotografica-visibiliza-la-hemoglobinuria-paroxistica-nocturna-enfermedad-rara-que-causa-trombos\/","title":{"rendered":"Una exposici\u00f3n fotogr\u00e1fica visibiliza la hemoglobinuria parox\u00edstica nocturna, enfermedad rara que causa trombos"},"content":{"rendered":"<div data-aida-text=\"\"><!----><!----><!----><!--[--><!--[--><!--[--><!----><!----><!--[--><\/p>\n<p class=\"ft-text\">La <strong>exposici\u00f3n fotogr\u00e1fica &#8216;Moments&#8217;,<\/strong> de la <strong>Associaci\u00f3 de Hemoglobinuria Parox\u00edstica Nocturna (HPN), <\/strong>estar\u00e1 en el vest\u00edbulo del <a class=\"ft-link ft-link--decoration broken_link\" href=\"https:\/\/www.elperiodico.com\/es\/temas\/hospital-vall-hebron-25591\" target=\"_blank\">hospital materno-infantil de Vall d&#8217;Hebron<\/a> hasta el pr\u00f3ximo 14 de julio. Inaugurada el pasado d\u00eda 1, esta muestra itinerante recoge <strong>algunos de los momentos que viven las personas afectadas<\/strong> por HPN. &#8216;Moments&#8217; presenta los retratos y testimonios de ocho personas (seis pacientes y dos m\u00e9dicos).\u00a0El autor de las im\u00e1genes es el <strong>fotoperiodista Toni Santiso. <\/strong><\/p>\n<p><!--]--><!----><!----><!----><!----><!----><!----><!----><!----><!----><\/p>\n<aside class=\"ft-ad ft-ad--roba ft-ad--robaNotext ft-helper-hide-md\"\/><!--[--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--]--><!----><!----><!--]--><!--[--><!----><!----><!----><!----><\/p>\n<figure class=\"ft-img\" data-aida-image=\"\"><picture><!--[--><!--[--><source media=\"(min-width:640.1px)\" srcset=\"https:\/\/estaticos-cdn.prensaiberica.es\/clip\/4bb118d1-2991-4f28-b238-626049dbb399_source-aspect-ratio_default_0.webp\" type=\"image\/webp\" width=\"1600.0\" height=\"1069.0\"><source media=\"(min-width: 320.1px) and (max-width: 640px)\" srcset=\"https:\/\/estaticos-cdn.prensaiberica.es\/clip\/4bb118d1-2991-4f28-b238-626049dbb399_source-aspect-ratio_640w_0.webp\" type=\"image\/webp\" width=\"640.0\" height=\"428.0\"><source media=\"(max-width: 320px)\" srcset=\"https:\/\/estaticos-cdn.prensaiberica.es\/clip\/4bb118d1-2991-4f28-b238-626049dbb399_source-aspect-ratio_320w_0.webp\" type=\"image\/webp\" width=\"320.0\" height=\"214.0\"><source media=\"(min-width:640.1px)\" srcset=\"https:\/\/estaticos-cdn.prensaiberica.es\/clip\/4bb118d1-2991-4f28-b238-626049dbb399_source-aspect-ratio_default_0.jpg\" type=\"image\/jpeg\" width=\"1600.0\" height=\"1069.0\" data-aida-photoclipping=\"\"><source media=\"(min-width: 320.1px) and (max-width: 640px)\" srcset=\"https:\/\/estaticos-cdn.prensaiberica.es\/clip\/4bb118d1-2991-4f28-b238-626049dbb399_source-aspect-ratio_640w_0.jpg\" type=\"image\/jpeg\" width=\"640.0\" height=\"428.0\" data-aida-photoclipping=\"\"><source media=\"(max-width: 320px)\" srcset=\"https:\/\/estaticos-cdn.prensaiberica.es\/clip\/4bb118d1-2991-4f28-b238-626049dbb399_source-aspect-ratio_320w_0.jpg\" type=\"image\/jpeg\" width=\"320.0\" height=\"214.0\" data-aida-photoclipping=\"\"><!--]--><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/estaticos-cdn.prensaiberica.es\/clip\/4bb118d1-2991-4f28-b238-626049dbb399_alta-libre-aspect-ratio_default_0.jpg\" width=\"1200\" height=\"802\" alt=\"La exposici\u00f3n 'Moments' de la Associaci\u00f3 de Hemoglobinuria Parox\u00edstica Nocturna (HPN), en Vall d'Hebron.\" class=\"ft-helper-img-rd\" loading=\"lazy\" hasdataaida=\"true\"\/><!--]--><\/source><\/source><\/source><\/source><\/source><\/source><\/picture><figcaption data-aida-caption=\"\">\n<p class=\"ft-helper-fontColor-quaternary ft-helper-fontSize-body-S ft-helper-spacer-t-xxs\">La exposici\u00f3n &#8216;Moments&#8217; de la Associaci\u00f3 de Hemoglobinuria Parox\u00edstica Nocturna (HPN), en Vall d&#8217;Hebron. <span class=\"ft-helper-fontWeight-800 ft-helper-text-transform-uppercase\" data-aida-captionauthor=\"\"><!--[--><!--[--> \/ Manu Mitru<!--]--><!--]--><\/span><\/p>\n<\/figcaption><!----><\/figure>\n<p><!----><!----><!----><!----><!----><!----><!----><!----><!----><!--[--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--]--><!----><!----><!--]--><!--[--><!----><!----><!--[--><\/p>\n<p class=\"ft-text\">La hemoglobinuria parox\u00edstica nocturna es una <a class=\"ft-link ft-link--decoration broken_link\" href=\"https:\/\/www.elperiodico.com\/es\/temas\/enfermedades-raras-28531\" target=\"_blank\">enfermedad rara<\/a> caracterizada por una <strong>hem\u00f3lisis intravascular<\/strong> (esto es, la destrucci\u00f3n de los gl\u00f3bulos rojos en el torrente sangu\u00edneo) que da lugar a la hemoglobinuria en forma de <strong>episodios de orinas oscuras<\/strong> (y, a veces, negras). La incidencia de esta patolog\u00eda es de <strong>uno o dos casos por mill\u00f3n de habitantes al a\u00f1o.<\/strong><\/p>\n<p><!--]--><!----><!----><!----><!----><!----><!--[--><!----><!----><!----><!--]--><!----><!----><!----><!----><!----><!--[--><!--[--><\/p>\n<aside class=\"ft-ad ft-ad--intext ft-helper-hide-md\"\/><!--]--><!--[--><\/p>\n<aside class=\"ft-ad ft-ad--intext  ft-helper-hide-xs\"\/><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--]--><!----><!----><!--]--><!--[--><!----><!----><!--[--><\/p>\n<p class=\"ft-text\">Los <strong>s\u00edntomas<\/strong> de la HPN pueden ser particularmente incapacitantes e incluyen <strong>cansancio cr\u00f3nico, <\/strong>desproporcionado al grado de anemia, <strong>dolor abdominal recurrente, disfagia<\/strong> y disfunci\u00f3n er\u00e9ctil en el hombre. Estos s\u00edntomas, as\u00ed como la aparici\u00f3n de trombosis y aplasia medular, afectan de forma significativa la <strong>calidad de vida<\/strong> de los pacientes.<\/p>\n<p><!--]--><!----><!----><!----><!----><!----><!----><!----><!----><!----><!----><!--[--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--]--><!----><!----><!--]--><!--[--><!----><!----><!----><!----><!----><!----><\/p>\n<h3 class=\"ft-helper-spacer-t-xs ft-helper-fontSize-heading-XS\">Las trombosis<\/h3>\n<p><!----><!----><!----><!----><!----><!----><!----><!--[--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--]--><!----><!----><!--]--><!--[--><!----><!----><!--[--><\/p>\n<p class=\"ft-text\">La trombosis es la causa principal de <strong>mortalidad precoz, <\/strong>con una vida media despu\u00e9s del diagn\u00f3stico de 10 a 15 a\u00f1os, aunque aproximadamente<strong> el 35% de los pacientes con HPN mueren en el plazo de cinco a\u00f1os <\/strong>despu\u00e9s del diagn\u00f3stico.<\/p>\n<p><!--]--><!----><!----><!----><!----><!----><!----><!----><!----><!----><!----><\/p>\n<aside class=\"ft-ad ft-ad--roba ft-ad--robaNotext ft-helper-hide-md\"\/><!--[--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--]--><!----><!----><!--]--><!--[--><!----><!----><!--[--><\/p>\n<p class=\"ft-text\">La Associaci\u00f3n HPN naci\u00f3 en 2008. Esta asociaci\u00f3n, <strong>con sede en Igualada, <\/strong>es la \u00fanica de todo el territorio espa\u00f1ol que da apoyo a los pacientes con HPN y a sus familiares. En 2023, para conmemorar<strong> sus primeros 15 a\u00f1os,<\/strong> la entidad cre\u00f3 la exposici\u00f3n fotogr\u00e1fica itinerante &#8216;Moments&#8217;, con el objetivo de <strong>reforzar la visibilidad de la enfermedad. <\/strong><\/p>\n<p><!--]--><!----><!----><!----><!----><!----><!----><!----><!----><!----><!----><!----><!--[--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--]--><!----><!----><!--]--><!--[--><!----><!----><!----><!----><\/p>\n<figure class=\"ft-img\" data-aida-image=\"\"><picture><!--[--><!--[--><source media=\"(min-width:640.1px)\" srcset=\"https:\/\/estaticos-cdn.prensaiberica.es\/clip\/297c8ebd-02b8-4822-92ab-339b91ef48bb_source-aspect-ratio_default_0.webp\" type=\"image\/webp\" width=\"1600.0\" height=\"1069.0\"><source media=\"(min-width: 320.1px) and (max-width: 640px)\" srcset=\"https:\/\/estaticos-cdn.prensaiberica.es\/clip\/297c8ebd-02b8-4822-92ab-339b91ef48bb_source-aspect-ratio_640w_0.webp\" type=\"image\/webp\" width=\"640.0\" height=\"428.0\"><source media=\"(max-width: 320px)\" srcset=\"https:\/\/estaticos-cdn.prensaiberica.es\/clip\/297c8ebd-02b8-4822-92ab-339b91ef48bb_source-aspect-ratio_320w_0.webp\" type=\"image\/webp\" width=\"320.0\" height=\"214.0\"><source media=\"(min-width:640.1px)\" srcset=\"https:\/\/estaticos-cdn.prensaiberica.es\/clip\/297c8ebd-02b8-4822-92ab-339b91ef48bb_source-aspect-ratio_default_0.jpg\" type=\"image\/jpeg\" width=\"1600.0\" height=\"1069.0\" data-aida-photoclipping=\"\"><source media=\"(min-width: 320.1px) and (max-width: 640px)\" srcset=\"https:\/\/estaticos-cdn.prensaiberica.es\/clip\/297c8ebd-02b8-4822-92ab-339b91ef48bb_source-aspect-ratio_640w_0.jpg\" type=\"image\/jpeg\" width=\"640.0\" height=\"428.0\" data-aida-photoclipping=\"\"><source media=\"(max-width: 320px)\" srcset=\"https:\/\/estaticos-cdn.prensaiberica.es\/clip\/297c8ebd-02b8-4822-92ab-339b91ef48bb_source-aspect-ratio_320w_0.jpg\" type=\"image\/jpeg\" width=\"320.0\" height=\"214.0\" data-aida-photoclipping=\"\"><!--]--><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/estaticos-cdn.prensaiberica.es\/clip\/297c8ebd-02b8-4822-92ab-339b91ef48bb_alta-libre-aspect-ratio_default_0.jpg\" width=\"1200\" height=\"802\" alt=\"La exposici\u00f3n 'Moments' de la Associaci\u00f3 de Hemoglobinuria Parox\u00edstica Nocturna (HPN), en Vall d'Hebron.\" class=\"ft-helper-img-rd\" loading=\"lazy\" hasdataaida=\"true\"\/><!--]--><\/source><\/source><\/source><\/source><\/source><\/source><\/picture><figcaption data-aida-caption=\"\">\n<p class=\"ft-helper-fontColor-quaternary ft-helper-fontSize-body-S ft-helper-spacer-t-xxs\">La exposici\u00f3n &#8216;Moments&#8217; de la Associaci\u00f3 de Hemoglobinuria Parox\u00edstica Nocturna (HPN), en Vall d&#8217;Hebron. <span class=\"ft-helper-fontWeight-800 ft-helper-text-transform-uppercase\" data-aida-captionauthor=\"\"><!--[--><!--[--> \/ Manu Mitru<!--]--><!--]--><\/span><\/p>\n<\/figcaption><!----><\/figure>\n<p><!----><!----><!----><!----><!----><!----><!----><!----><!----><!--[--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--]--><!----><!----><!--]--><!--[--><!----><!----><!--[--><\/p>\n<p class=\"ft-text\">Su impulsor es Toni Santiso, fot\u00f3grafo experto en fotoperiodismo y fotograf\u00eda documental y publicitaria. Tras estar expuesta en lugares como el <strong>Hospital de Igualada, Consorci Sanitari de Terrassa (CST) el Hospital Cl\u00ednic o el Hospital del Mar,<\/strong> &#8216;Moments&#8217; <strong>ha recalado este julio<\/strong> en Vall d&#8217;Hebron.<\/p>\n<p><!--]--><!----><!----><!----><!----><!----><!--[--><!----><!----><!----><!----><!--]--><!----><!----><!----><!----><!--[--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><\/p>\n<aside class=\"ft-ad ft-ad--intext ft-helper-hide-md\"\/><!--]--><!--[--><\/p>\n<aside class=\"ft-ad ft-ad--intext  ft-helper-hide-xs\"\/><!--]--><!--]--><!----><!----><!--]--><!--[--><!----><!----><!--[--><\/p>\n<p class=\"ft-text\">El objetivo de la muestra es, adem\u00e1s, ser un<strong> espacio para que los pacientes compartan su experiencia<\/strong> y concienciar a la poblaci\u00f3n de los retos a los que se enfrentan los pacientes en su d\u00eda a d\u00eda viviendo con una enfermedad minoritaria.<\/p>\n<p><!--]--><!----><!----><!----><!----><!----><!----><!----><!----><!----><!----><!----><!--[--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--[--><!----><!--]--><!--]--><!----><!----><!--]--><!--]--><!--[--><!----><!--[--><!--]--><!----><!--[--><!----><!----><!----><!--]--><span\/><!--]--><!--]--><!----><\/div>\n<p><a href=\"https:\/\/www.elperiodico.com\/es\/sanidad\/20250704\/exposicion-fotografica-visibiliza-la-hemoglobinuria-paroxistica-nocturna-enfermedad-rara-trombosis-vall-hebron-119352511?utm_source=rss-noticias&amp;utm_medium=feed&amp;utm_campaign=sanidad\" class=\"broken_link\">source<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>La exposici\u00f3n fotogr\u00e1fica &#8216;Moments&#8217;, de la Associaci\u00f3 de Hemoglobinuria Parox\u00edstica Nocturna (HPN), estar\u00e1 en el vest\u00edbulo del hospital<\/p>\n","protected":false},"author":1,"featured_media":39752,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_bbp_topic_count":0,"_bbp_reply_count":0,"_bbp_total_topic_count":0,"_bbp_total_reply_count":0,"_bbp_voice_count":0,"_bbp_anonymous_reply_count":0,"_bbp_topic_count_hidden":0,"_bbp_reply_count_hidden":0,"_bbp_forum_subforum_count":0,"_joinchat":[],"footnotes":""},"categories":[1],"tags":[],"class_list":["post-14221","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticias"],"featured_image_urls":{"full":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=1920&resize=1920,998&ssl=1",1920,998,false],"thumbnail":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=150&resize=150,150&ssl=1",150,150,false],"medium":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=300&resize=300,300&ssl=1",300,300,false],"medium_large":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=768&resize=768,0&ssl=1",768,0,false],"large":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=1024&resize=1024,1024&ssl=1",1024,1024,false],"1536x1536":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=1536&resize=1536,1536&ssl=1",1536,1536,false],"2048x2048":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=2048&resize=2048,2048&ssl=1",2048,2048,false],"morenews-large":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=825&resize=825,575&ssl=1",825,575,false],"morenews-medium":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=590&resize=590,410&ssl=1",590,410,false]},"author_info":{"info":["admin"]},"category_info":"<a href=\"https:\/\/blogemergencias.es\/index.php\/category\/noticias\/\" rel=\"category tag\">Noticias<\/a>","tag_info":"Noticias","comment_count":0,"_links":{"self":[{"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/posts\/14221","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/comments?post=14221"}],"version-history":[{"count":0,"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/posts\/14221\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/media\/39752"}],"wp:attachment":[{"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/media?parent=14221"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/categories?post=14221"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/tags?post=14221"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}