{"id":47525,"date":"2022-10-20T14:02:06","date_gmt":"2022-10-20T12:02:06","guid":{"rendered":"https:\/\/buletin.de\/bucuresti\/?p=47525"},"modified":"2022-10-20T14:02:09","modified_gmt":"2022-10-20T12:02:09","slug":"ziua-internationala-a-mastocitozei-in-romania-boala-se-poate-diagnostica-doar-in-capitala","status":"publish","type":"post","link":"https:\/\/buletin.de\/bucuresti\/ziua-internationala-a-mastocitozei-in-romania-boala-se-poate-diagnostica-doar-in-capitala\/","title":{"rendered":"Ziua interna\u021bional\u0103 a Mastocitozei. \u00cen Rom\u00e2nia boala se poate diagnostica doar \u00een Capital\u0103"},"content":{"rendered":"\n<p><strong>Ast\u0103zi este Ziua Interna\u021bional\u0103 de Con\u0219tientizare a Mastocitozei, boala de care sufer\u0103 184 de rom\u00e2ni \u0219i care poate fi diagnosticat\u0103, conform criteriilor Organiza\u021biei Mondiale a S\u0103n\u0103t\u0103\u021bii (OMS), doar \u00een \u00a0Centrul Euopean de Excelen\u021ba \u00een Mastocitoz\u0103 de la Bucure\u0219ti. Asocia\u021bia Suport Mastocitoz\u0103 sus\u021bine c\u0103 via\u021ba celor care au aceast\u0103 boal\u0103 depinde de cromoglicat, medicament off label pentru care \u00een Rom\u00e2nia nu exist\u0103 legisla\u021bie \u0219i statul refuz\u0103 de 14 ani de zile s\u0103-l deconteze.<\/strong><\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\"><p>Ne este greu, dizabilitate noastr\u0103 este invizibila, dar teribila. Nu contribui\u021bi \u0219i voi la ea. Mul\u021bi dintre noi, adulti sau copii, avem colegi al c\u0103ror scop \u00een viata este sa vad\u0103 c\u00e2t de mult rezistam bullyingului sau mobbingului, care r\u00e2d de ceea ce pe noi ne chinuie. Ziua de azi este despre noi, despre lupta pentru cromoglicat, despre faptul ca nu avem acces la tratamentul off label. <\/p><cite>A declarat pre\u0219edinta Asocia\u021biei Suport Mastocitoza Rom\u00e2nia.<\/cite><\/blockquote>\n\n\n\n<p class=\"has-background\" style=\"background-color:#fcf4df\"><strong>Ce este mastocitoza? <br><\/strong><br>Mastocitoza este o boal\u0103 oncologic\u0103 foarte rar\u0103 care, pe l\u00e2ng\u0103 simptomele oric\u0103rei boli oncologice, are particularitatea de a determina \u0219ocuri anafilactice. Astfel, o criza de dureri oncologice este \u00eenso\u021bit\u0103 de \u0219oc anafilactic cu HTA peste 16 \u0219i sindromul serotoninergic. Unii pacien\u021bi pot face \u0219i sindromul Kounis. Pielea multora dintre bolnavii de mastocitoz\u0103 este plin\u0103 de pete \u0219i r\u0103ni.<\/p>\n\n\n\n<p>Informa\u021bii despre mastocitoz\u0103 \u0219i sindromul de activare mastocitar\u0103 exist\u0103 pe <a href=\"http:\/\/www.mastocitoza.ro\/\"><strong>site-ul<\/strong><\/a> \u0219i pagina de <strong><a href=\"https:\/\/mastocitoza.ro\/2022\/02\/21\/ghidul-de-diagnosticare-si-tratament-in-mastocitoza\/\">Facebook<\/a><\/strong> a Asocia\u021biei Suport Mastocitoz\u0103, unde se poate g\u0103si \u0219i un ghid de diagnosticare a bolii.<\/p>\n\n\n\n<p>Pentru diganostricare conform criterilor OMS pacien\u021bii trebuie s\u0103 mearg\u0103 la Centrul Euopean de Excelenta \u00een Mastocitoz\u0103 din Bucure\u0219ti care este parte a Registrului Interna\u021bional de Mastocitoz\u0103 \u0219i a re\u021belei internationale de centre de excelen\u021b\u0103 \u00een mastocitoz\u0103. Asocia\u021bia Suport Mastociotz\u0103 Rom\u00e2nia este membr\u0103 a The Mast Cell Disease Society \u0219i EURORDIS.<\/p>\n\n\n\n<p>Surs\u0103 Cover: Facebook, Asocia\u021bia de Suport Mastocitoz\u0103<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Ast\u0103zi este Ziua Interna\u021bional\u0103 de Con\u0219tientizare a Mastocitozei, boala de care sufer\u0103 184 de rom\u00e2ni \u0219i care poate fi diagnosticat\u0103, conform criteriilor Organiza\u021biei Mondiale a S\u0103n\u0103t\u0103\u021bii (OMS), doar \u00een \u00a0Centrul Euopean de Excelen\u021ba \u00een Mastocitoz\u0103 de la Bucure\u0219ti. Asocia\u021bia Suport Mastocitoz\u0103 sus\u021bine c\u0103 via\u021ba celor care au aceast\u0103 boal\u0103 depinde de cromoglicat, medicament off label [&hellip;]<\/p>\n","protected":false},"author":17,"featured_media":47527,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"ngg_post_thumbnail":0,"footnotes":""},"categories":[62],"tags":[],"ppma_author":[22576],"class_list":["post-47525","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-stiri"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v25.3 (Yoast SEO v27.5) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Ziua interna\u021bional\u0103 a Mastocitozei. \u00cen Rom\u00e2nia boala se poate diagnostica doar \u00een Capital\u0103 - Buletin de Bucure\u0219ti<\/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:\/\/buletin.de\/bucuresti\/ziua-internationala-a-mastocitozei-in-romania-boala-se-poate-diagnostica-doar-in-capitala\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Ziua interna\u021bional\u0103 a Mastocitozei. \u00cen Rom\u00e2nia boala se poate diagnostica doar \u00een Capital\u0103\" \/>\n<meta property=\"og:description\" content=\"Ast\u0103zi este Ziua Interna\u021bional\u0103 de Con\u0219tientizare a Mastocitozei, boala de care sufer\u0103 184 de rom\u00e2ni \u0219i care poate fi diagnosticat\u0103, conform criteriilor Organiza\u021biei Mondiale a S\u0103n\u0103t\u0103\u021bii (OMS), doar \u00een \u00a0Centrul Euopean de Excelen\u021ba \u00een Mastocitoz\u0103 de la Bucure\u0219ti. Asocia\u021bia Suport Mastocitoz\u0103 sus\u021bine c\u0103 via\u021ba celor care au aceast\u0103 boal\u0103 depinde de cromoglicat, medicament off label [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/buletin.de\/bucuresti\/ziua-internationala-a-mastocitozei-in-romania-boala-se-poate-diagnostica-doar-in-capitala\/\" \/>\n<meta property=\"og:site_name\" content=\"Buletin de Bucure\u0219ti\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/buletin.de.buc\" \/>\n<meta property=\"article:published_time\" content=\"2022-10-20T12:02:06+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2022-10-20T12:02:09+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/buletin.de\/bucuresti\/wp-content\/uploads\/301822509_1855238208149164_3741715131526325725_n.jpeg\" \/>\n\t<meta property=\"og:image:width\" content=\"720\" \/>\n\t<meta property=\"og:image:height\" content=\"416\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Florin R\u00e2\u0219teiu\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Florin R\u00e2\u0219teiu\" \/>\n\t<meta name=\"twitter:label2\" content=\"Estimated reading time\" \/>\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:\\\/\\\/buletin.de\\\/bucuresti\\\/ziua-internationala-a-mastocitozei-in-romania-boala-se-poate-diagnostica-doar-in-capitala\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/buletin.de\\\/bucuresti\\\/ziua-internationala-a-mastocitozei-in-romania-boala-se-poate-diagnostica-doar-in-capitala\\\/\"},\"author\":{\"name\":\"Florin R\u00e2\u0219teiu\",\"@id\":\"https:\\\/\\\/buletin.de\\\/bucuresti\\\/#\\\/schema\\\/person\\\/b0686d7a8b666c6afc78239777fd8a89\"},\"headline\":\"Ziua interna\u021bional\u0103 a Mastocitozei. \u00cen Rom\u00e2nia boala se poate diagnostica doar \u00een Capital\u0103\",\"datePublished\":\"2022-10-20T12:02:06+00:00\",\"dateModified\":\"2022-10-20T12:02:09+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/buletin.de\\\/bucuresti\\\/ziua-internationala-a-mastocitozei-in-romania-boala-se-poate-diagnostica-doar-in-capitala\\\/\"},\"wordCount\":345,\"publisher\":{\"@id\":\"https:\\\/\\\/buletin.de\\\/bucuresti\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/buletin.de\\\/bucuresti\\\/ziua-internationala-a-mastocitozei-in-romania-boala-se-poate-diagnostica-doar-in-capitala\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/buletin.de\\\/bucuresti\\\/wp-content\\\/uploads\\\/301822509_1855238208149164_3741715131526325725_n.jpeg\",\"articleSection\":[\"\u0218tiri\"],\"inLanguage\":\"en-GB\",\"copyrightYear\":\"2022\",\"copyrightHolder\":{\"@id\":\"https:\\\/\\\/buletin.de\\\/bucuresti\\\/#organization\"}},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/buletin.de\\\/bucuresti\\\/ziua-internationala-a-mastocitozei-in-romania-boala-se-poate-diagnostica-doar-in-capitala\\\/\",\"url\":\"https:\\\/\\\/buletin.de\\\/bucuresti\\\/ziua-internationala-a-mastocitozei-in-romania-boala-se-poate-diagnostica-doar-in-capitala\\\/\",\"name\":\"Ziua interna\u021bional\u0103 a Mastocitozei. \u00cen Rom\u00e2nia boala se poate diagnostica doar \u00een Capital\u0103 - 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