{"id":10218,"date":"2022-01-25T15:18:49","date_gmt":"2022-01-25T20:18:49","guid":{"rendered":"https:\/\/rqmo.org\/jean-michel\/"},"modified":"2022-01-25T15:18:49","modified_gmt":"2022-01-25T20:18:49","slug":"jean-michel","status":"publish","type":"post","link":"https:\/\/rqmo.org\/en\/jean-michel\/","title":{"rendered":"Jean-Michel"},"content":{"rendered":"<h3><img fetchpriority=\"high\" decoding=\"async\" class=\"alignnone size-medium wp-image-2702\" src=\"https:\/\/rqmo.org\/wp-content\/uploads\/2022\/01\/Jean-Michel-300x300.jpg\" alt=\"\" width=\"300\" height=\"300\" srcset=\"https:\/\/rqmo.org\/wp-content\/uploads\/2022\/01\/Jean-Michel-300x300.jpg 300w, https:\/\/rqmo.org\/wp-content\/uploads\/2022\/01\/Jean-Michel-150x150.jpg 150w, https:\/\/rqmo.org\/wp-content\/uploads\/2022\/01\/Jean-Michel.jpg 428w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/h3>\n<h3><\/h3>\n<h3>When the sun hurts&#8230;<\/h3>\n<blockquote>\n<div>Jean-Michel, aged 10, suffers from <strong>congenital erythropoietic porphyria<\/strong>.<\/div>\n<div><\/div>\n<div>Because of this illness, he can&#8217;t play outside. Porphyrins in red blood cells from bone marrow and plasma are deposited under the skin, causing severe cutaneous photosensitivity to all UV rays, including sunlight, fluorescents and heat. When the skin is exposed, it can become covered with bubbles and vesicles (droplets) that can rupture and become infected. Lesions are often accompanied by hollowing of the skin, leading to tissue death and extensive scarring. This can even lead to progressive destruction of the nose, ears and fingers.<\/div>\n<div><\/div>\n<div>Jean-Michel has to be constantly protected from UV rays, which prevents him from doing the same things as other children his age, despite his physical condition, which allows him to do so. That&#8217;s why he wanted a big place where he could play with his friends, and &#8220;not just on rainy days&#8221;.<\/div>\n<div>Jean-Michel received a huge dome thanks to the generosity of many people, and a pool and basketball hoop courtesy of the Children&#8217;s Wish Foundation. He can now play outside the house with his friends.<\/div>\n<div><\/div>\n<div>Following several difficult experiences with their child&#8217;s illness, Jean-Michel&#8217;s parents set up the <a href=\"http:\/\/www.fondationjeanmicheldufour.com\/accueil.htm\" target=\"_blank\" rel=\"noopener\">Jean-Michel Dufour<\/a> Foundation to help other children with orphan diseases.<\/div>\n<\/blockquote>\n<div>For more information on congenital erythropoietic porphyria  <strong><a href=\"http:\/\/www.orpha.net\/consor\/cgi-bin\/Disease_Search.php?lng=FR&amp;data_id=11303&amp;Disease_Disease_Search_diseaseGroup=porphyrie-erythropoietique-congenitale-&amp;Disease_Disease_Search_diseaseType=Pat&amp;Maladie(s)\/groupes%20de%20maladies=Porphyrie-erythropoietique-congenitale&amp;title=Porphyrie-erythropoietique-congenitale&amp;search=Disease_Search_Simple\" target=\"_blank\" rel=\"noopener\">&gt;&gt;&gt;&gt;<\/a><\/strong><\/div>\n","protected":false},"excerpt":{"rendered":"<p>When the sun hurts&#8230; Jean-Michel, aged 10, suffers from congenital erythropoietic porphyria. Because of this illness, he can&#8217;t play outside. Porphyrins in red blood cells from bone marrow and plasma are deposited under the skin, causing severe cutaneous photosensitivity to all UV rays, including sunlight, fluorescents and heat. When the skin is exposed, it can [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"default","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[120],"tags":[],"class_list":["post-10218","post","type-post","status-publish","format-standard","hentry","category-portraits"],"_links":{"self":[{"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/posts\/10218","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/comments?post=10218"}],"version-history":[{"count":0,"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/posts\/10218\/revisions"}],"wp:attachment":[{"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/media?parent=10218"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/categories?post=10218"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/tags?post=10218"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}