{"id":46566,"date":"2025-05-06T16:11:49","date_gmt":"2025-05-06T20:11:49","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=46566"},"modified":"2026-08-13T10:46:46","modified_gmt":"2026-08-13T15:46:46","slug":"pourquoi-un-diagnostic-precoce-est-essentiel-dans-la-maladie-derdheim-chester-lhistoire-de-marc","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/why-early-diagnosis-matters-in-erdheim-chester-disease-marcs-story\/","title":{"rendered":"Pourquoi un diagnostic pr\u00e9coce est essentiel dans la maladie d'Erdheim-Chester : l'histoire de Marc"},"content":{"rendered":"<h2><strong>Pourquoi un diagnostic pr\u00e9coce est essentiel dans la maladie d'Erdheim-Chester : l'histoire de Marc<\/strong><\/h2>\n<p>Recevoir un diagnostic de maladie rare comme la maladie d\u2019Erdheim-Chester (ECD) peut \u00eatre bouleversant. Pour beaucoup, le chemin vers la r\u00e9ponse est long, sem\u00e9 d\u2019emb\u00fbches et souvent marqu\u00e9 par des ann\u00e9es d\u2019incertitude. Mais certaines histoires nous rappellent pourquoi la sensibilisation, un d\u00e9pistage pr\u00e9coce et une attitude positive sont essentiels. Aujourd\u2019hui, nous avons l\u2019honneur de partager l\u2019une de ces histoires.<\/p>\n<p>In a series of three short video interviews, Marc Killips talks candidly about his journey to diagnosis and what early detection has meant for his life. His experience is a powerful reminder of why early diagnosis makes a difference in managing this complex and rare disease\u2014and how staying positive can help along the way.<\/p>\n<h2><strong>D\u00e9couvrez l'histoire de Marc<\/strong><\/h2>\n<p>We invite you to watch this brief video interview to hear Marc Killips\u2019 journey in his own words. His experience is a testament to the power of early diagnosis, quick action, and the strength that comes from staying positive and finding community support.<\/p>\n<div style=\"width: 1080px;\" class=\"wp-video\"><video class=\"wp-video-shortcode\" id=\"video-46566-1\" width=\"1080\" height=\"608\" poster=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/05\/Screenshot-2025-05-07-at-2.29.38\u202fPM-scaled.jpg\" preload=\"metadata\" controls=\"controls\"><source type=\"video\/mp4\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/05\/2024-Patient-Story-Bringing-Hope-Marc.mp4?_=1\" \/><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/05\/2024-Patient-Story-Bringing-Hope-Marc.mp4\">https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/05\/2024-Patient-Story-Bringing-Hope-Marc.mp4<\/a><\/video><\/div>\n<h2><strong>Une vie interrompue, mais pas compromise<\/strong><\/h2>\n<p>Marc describes how his diagnosis came somewhat unexpectedly. \u201cI went in because of equilibrium issues and tingling in my hands,\u201d he shares. \u201cIt wasn\u2019t intense. It was just\u2026 strange.\u201d Like many, Marc initially thought it was something minor. But because his healthcare team took his concerns seriously and acted quickly with further testing, he received a diagnosis of ECD before the disease had significantly progressed.<\/p>\n<p>\u201c J\u2019ai eu de la chance qu\u2019ils aient r\u00e9agi rapidement \u201d, explique Marc. \u201c Le fait d\u2019obtenir des r\u00e9ponses le plus t\u00f4t possible a fait toute la diff\u00e9rence pour moi. \u201d<\/p>\n<h2><strong>Le pouvoir de l'\u00e9coute, de l'action rapide et de l'optimisme<\/strong><\/h2>\n<p>In the first video short, Marc reflects on the role his care team played in catching ECD early. \u201cThey listened,\u201d he explains. \u201cEven when things didn\u2019t make sense, they kept digging.\u201d Because of their persistence\u2014and his own determination to stay positive\u2014Marc was able to get an early diagnosis, which has made managing the disease much more achievable.<\/p>\n<p>His story highlights the importance of not ignoring unusual symptoms, advocating for yourself, and staying hopeful, even when things are uncertain. Early testing and a positive mindset can lead to faster answers and better outcomes.<\/p>\n<h2><strong>Vivre avec des connaissances, du soutien et de l'espoir<\/strong><\/h2>\n<p>In the second segment, Marc talks about how receiving his diagnosis early gave him time to learn, connect, and plan. \u201cIt gave me the opportunity to understand what I\u2019m dealing with,\u201d he says. \u201cI found the ECD Global Alliance early in my journey, and knowing I wasn\u2019t alone made a huge difference.\u201d<\/p>\n<p>Marc a continu\u00e9 \u00e0 se tourner vers l'avenir, et il estime que le soutien de la communaut\u00e9 de l'ECDGA l'a aid\u00e9 \u00e0 rester optimiste et bien inform\u00e9.<\/p>\n<h2><strong>Aller de l'avant avec confiance et optimisme<\/strong><\/h2>\n<p>Dans la derni\u00e8re vid\u00e9o, Marc nous fait part de son point de vue aujourd\u2019hui. \u201c Ce n\u2019est pas facile \u201d, dit-il. \u201c Mais j\u2019ai l\u2019impression d\u2019avoir une \u00e9quipe \u00e0 mes c\u00f4t\u00e9s, et j\u2019ai du temps. C\u2019est ce qui a tout chang\u00e9. \u201d<\/p>\n<p>Marc believes that staying positive has played a key role in how he\u2019s approached his diagnosis and treatment. \u201cYou have to stay hopeful,\u201d he says. \u201cGetting tested early gave me time\u2014time to understand, time to connect, and time to plan for the future.\u201d<\/p>\n<p>His story underscores the importance of early diagnosis\u2014not just for patients, but for their families, care teams, and everyone impacted by ECD. The sooner ECD is identified and testing is completed, the sooner patients can access specialized care and the support they need.<\/p>\n<p><strong><em>L'Alliance mondiale contre la maladie d'Erdheim-Chester (ECDGA) ne fournit ni conseils m\u00e9dicaux, ni diagnostics, ni traitements. L'ensemble du contenu est pr\u00e9sent\u00e9 \u00e0 titre purement informatif. Veuillez consulter un professionnel de sant\u00e9 pour toute question d'ordre m\u00e9dical.<\/em><\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>Why Early Diagnosis Matters in Erdheim-Chester Disease: Marc\u2019s Story Being diagnosed with a rare disease like Erdheim-Chester Disease (ECD) can be overwhelming. For many, the path to finding answers is [&hellip;]<\/p>\n","protected":false},"author":20,"featured_media":174691,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[51],"tags":[375,378,387,380,383,374,384,386,388,379,376,385,381,377,382],"class_list":["post-46566","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-ecdawareness","tag-ecdcommunity","tag-ecdga","tag-ecdsupport","tag-ecdvolunteer","tag-erdheimchesterdisease","tag-hopeforecd","tag-makerarevisible","tag-powerofvolunteers","tag-rarebutstrong","tag-raredisease","tag-supportraredisease","tag-tealandnavy","tag-volunteerforecd","tag-zebraribbon"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/46566","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=46566"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/46566\/revisions"}],"predecessor-version":[{"id":174702,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/46566\/revisions\/174702"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/174691"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=46566"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=46566"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=46566"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}