{"id":86630,"date":"2025-09-09T09:00:00","date_gmt":"2025-09-09T07:00:00","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=86630"},"modified":"2025-09-09T11:33:39","modified_gmt":"2025-09-09T09:33:39","slug":"lhistoire-de-lily-may-vivre-avec-un-gliome-pediatrique-de-bas-grade","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/actualites\/oncology-fr\/lhistoire-de-lily-may-vivre-avec-un-gliome-pediatrique-de-bas-grade\/","title":{"rendered":"L\u2019histoire de Lily May : Vivre avec un gliome p\u00e9diatrique de bas grade"},"content":{"rendered":"    <section class=\"video-card \">\n        <div class=\"container\">\n            <!-- Block Details -->\n            <div class=\"video-card-header\">\n                <h3 class=\"video-card-block-title hidden heading-three\">\n                                    <\/h3>\n                <p class=\"charcoal-grey video-card-block-summary hidden\"> \n                                    <\/p>\n            <\/div>\n\n            <!-- Video Iframe embed -->\n                            <div class=\"video-embed\"> \n                <iframe loading=\"lazy\" title=\"IPSEN-UK_Lily_May_VASTFR_10mbps\" src=\"https:\/\/player.vimeo.com\/video\/1116683161?app_id=122963&#038;autoplay=1&#038;muted=1&#038;controls=1&#038;loop=1&#038;autopause=1&#038;background=0\" width=\"640\" height=\"360\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture\" data-ot-ignore><\/iframe>                <\/div>\n            \n            <!-- Block CTA -->\n            <div class=\"cta-block hidden\">\n                            <\/div>\n\n        <\/div>\n    <\/section>\n\n\n\n<p>Lily May est une petite fille de sept ans dynamique et d\u00e9termin\u00e9e, qui adore la gymnastique et le golf. Mais comme pour de nombreux enfants atteints d\u2019un gliome p\u00e9diatrique de bas grade (pLGG, de l\u2019anglais \u00ab&nbsp;peditraic low-grade glioma&nbsp;\u00bb), son quotidien a \u00e9t\u00e9 boulevers\u00e9 par cette tumeur c\u00e9r\u00e9brale rare.&nbsp;Bien que l\u2019incidence mondiale demeure inconnue<sup>1<\/sup>, le pLGG est une tumeur c\u00e9r\u00e9brale infantile rare, avec environ 700 enfants diagnostiqu\u00e9s dans l\u2019UE-5* chaque ann\u00e9e<sup>2<\/sup>.<\/p>\n\n\n\n<p>Lianna, la m\u00e8re de Lily May, se souvient des premiers signes inqui\u00e9tants qui se sont manifest\u00e9s.<\/p>\n\n\n\n<p><a><strong>\u00ab J\u2019ai su que quelque chose clochait d\u00e8s l\u2019\u00e2ge de quatre semaines, car Lily May passait des heures \u00e0 pleurer, on aurait dit qu\u2019elle souffrait. \u00bb \u2013 Lianna<\/strong><\/a><\/p>\n\n\n\n<p>Apr\u00e8s des mois d\u2019inqui\u00e9tude et de nombreuses visites chez le m\u00e9decin, le diagnostic d\u2019un gliome des voies optiques a \u00e9t\u00e9 pos\u00e9. Ce type de pLGG est une tumeur rare du nerf optique, repr\u00e9sentant environ 5&nbsp;% des tumeurs c\u00e9r\u00e9brales infantiles<sup>3<\/sup>. Le m\u00e9decin de Lily May l\u2019a m\u00eame qualifi\u00e9 de \u00ab&nbsp;d\u00e9couverte unique dans sa carri\u00e8re.&nbsp;\u00bb&nbsp; <\/p>\n\n\n\n<div style=\"height:41px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h5 class=\"wp-block-heading\"><strong>Le fardeau cach\u00e9 des tumeurs b\u00e9nignes<\/strong><strong><\/strong><\/h5>\n\n\n\n<p><\/p>\n\n\n\n<p>Malgr\u00e9 leur classification b\u00e9nigne, les pLGG sont progressifs et susceptibles de causer des dommages importants \u00e0 long terme, \u00e0 mesure qu\u2019ils se d\u00e9veloppent. C\u2019est une r\u00e9alit\u00e9 pour de nombreux enfants vivant avec un pLGG.<\/p>\n\n\n\n<p>La tumeur de Lily May a provoqu\u00e9 la quasi-c\u00e9cit\u00e9 de son \u0153il gauche, une vision p\u00e9riph\u00e9rique limit\u00e9e et une fatigue chronique. Le pLGG peut engendrer une multitude d\u2019autres handicaps, notamment des complications fonctionnelles et des sympt\u00f4mes neurologiques, conduisant souvent \u00e0 des retards de d\u00e9veloppement<sup>4<\/sup>.<\/p>\n\n\n\n<p>Au fardeau de sa maladie se rajoute la lourdeur de sa prise en charge.Les premi\u00e8res ann\u00e9es de Lily May ont \u00e9t\u00e9 marqu\u00e9es par des rendez-vous fr\u00e9quents \u00e0 l\u2019h\u00f4pital et de nombreuses interventions m\u00e9dicales. Lorsque sa tumeur a de nouveau grossi apr\u00e8s deux ans, le cycle de soins intensifs s\u2019est poursuivi. En raison de ces importants imp\u00e9ratifs m\u00e9dicaux, Lianna n\u2019a pas pu retourner au travail, ce qui a consid\u00e9rablement boulevers\u00e9 le quotidien de la famille.<\/p>\n\n\n\n<p>Du fait de leur localisation, de nombreux pLGG ne peuvent pas \u00eatre compl\u00e8tement retir\u00e9s par une intervention chirurgicale<sup>5<\/sup>, ce qui induit un cycle de traitement et des chirurgies souvent invasives. Le contr\u00f4le de la croissance de la tumeur ainsi que les complications importantes li\u00e9es au traitement tout au long de l\u2019enfance sont une r\u00e9alit\u00e9 pour les familles, qui affecte tous les pans du d\u00e9veloppement des enfants et g\u00e9n\u00e8rent des probl\u00e8mes de sant\u00e9 tout au long de leur vie<sup>6<\/sup>. Les activit\u00e9s essentielles de l\u2019enfance, telles que l\u2019\u00e9cole, le sport et les interactions sociales, sont souvent mises de c\u00f4t\u00e9<sup>7<\/sup>. Les innombrables visites de Lily May \u00e0 l\u2019h\u00f4pital ont et continueront d\u2019avoir un impact majeur sur sa vie sociale et son enfance plus largement.<\/p>\n\n\n\n<p>Sur le plan psychologique, les parents portent \u00e9galement un fardeau immense, pris entre leurs inqui\u00e9tudes concernant l\u2019impact de la tumeur sur la sant\u00e9 et le bien-\u00eatre de leur enfant, et la pression li\u00e9e \u00e0 la prise de d\u00e9cisions m\u00e9dicales cruciales pouvant influencer son avenir<sup>6<\/sup>.<\/p>\n\n\n\n<p><a>\u00ab <\/a><strong>Votre vision de la vie est compl\u00e8tement transform\u00e9e. Vous voulez prot\u00e9ger votre enfant, et vous allez faire tout ce qu&#8217;il faut pour qu\u2019il survive. \u00bb \u2013 Lianna<\/strong><\/p>\n\n\n\n<div style=\"height:26px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h5 class=\"wp-block-heading\"><strong>Une formidable r\u00e9silience face aux d\u00e9fis<\/strong><strong><\/strong><\/h5>\n\n\n\n<p><\/p>\n\n\n\n<p>Malgr\u00e9 ces immenses obstacles, les enfants vivant avec le pLGG, comme Lily May, font souvent preuve d\u2019une r\u00e9silience admirable et sont d\u00e9termin\u00e9s \u00e0 vivre une vie normale. Lily May poursuit ses passions et profite de chaque instant, avec la volont\u00e9 forte d\u2019\u00eatre comme tous les autres enfants, tout en grandissant avec la conscience que sa maladie la rend diff\u00e9rente.<\/p>\n\n\n\n<p>Ipsen s\u2019engage \u00e0 soutenir la communaut\u00e9 pLGG et \u00e0 mieux faire conna\u00eetre cette maladie complexe. Nous croyons que chaque enfant m\u00e9rite de vivre une enfance heureuse et saine, en continuant \u00e0 faire ce qui le rend heureux, et en s\u2019\u00e9panouissant pleinement jusqu\u2019\u00e0 l\u2019\u00e2ge adulte.<\/p>\n\n\n\n<div style=\"height:29px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>* France, Espagne, Royaume-Uni, Allemagne, Italie.<\/p>\n\n\n\n    <!--Accordion Cards Start Here-->\n    <section class=\"accordion bg-color-disabled\"  data-according-id=\"1575248647\">\n        <div class=\"container\">\n            <div class=\"row\">\n                <!--Accordion info section-->\n                <div class=\"column-1 col-xl-12 col-md-12 col-sm-12\">\n                    <div class=\"accordian-info\">\n                        <h3 class=\"accordian-heading hidden heading-three\" role=\"heading\" aria-level=\"2\">\n                                                    <\/h3>\n                        <p class=\"accordian-summary hidden\"><\/p>\n                    <\/div>\n                <\/div><!--Accordion info section over here -->\n\n                <div class=\"col-xl-12 col-lg-12 col-md-12 col-sm-12\">\n                    <div class=\"accordion accor-group\" id=\"accordionExample1575248647\">\n                         \n                                    <!-- Accordion with Expandable panel & FAQs -->\n                                    <div class=\"accordion-item accor-item\">\n                                        <p  role=\"heading\" aria-level=\"3\" class=\"accordion-header accor-head-para\" id=\"faqHeading0\">\n                                            <button class=\"accordion-button accor-faq-btn collapsed\" type=\"button\" data-bs-toggle=\"collapse\" data-bs-target=\"#faqHeading15752486470\" aria-expanded=\"false\" aria-controls=\"faqHeading15752486470\">\n                                                R\u00e9f\u00e9rences                                            <\/button>\n                                        <\/p>\n                                        <div id=\"faqHeading15752486470\" class=\"accordion-collapse collapse \" aria-labelledby=\"faqHeading0\" data-bs-parent=\"#accordionExample1575248647\">\n                                            <div class=\"accordion-body\">\n                                                <div class=\"accordion-data\">\n                                                    <p><p>[1] Moreira, D. C., Bouffet, E., &#038; Qaddoumi, I. (2024). The greatest challenge for pediatric low-grade glioma.\u00a0Neuro-oncology,\u00a026 ( 5 ), 975\u2013976. https:\/\/doi.org\/10.1093\/neuonc\/noae004<br \/>\n<br \/><\/br><\/p>\n<p>[2]Les estimations de l\u2019incidence et de la pr\u00e9valence annuelles pour la population de patients concern\u00e9s dans l\u2019UE-4 et au Royaume-Uni se basent sur les calculs d\u2019Ipsen \u00e0 partir de donn\u00e9es accessibles au public (Eurostat, population < 25 ans ; Global Burden of Disease 2019 ; Desandes et al. Incidence and survival of children with central nervous system primitive tumors in the French National Registry of Childhood Solid Tumors. Neuro Oncol. 2014 Jul;16 ( 7 ):975-83. doi: 10.1093\/neuonc\/not309; Qaddoumi et al. Outcome and prognostic features in pediatric gliomas: a review of 6212 cases from the Surveillance, Epidemiology, and End Results database. Cancer. 2009 Dec 15;115 ( 24 ) :5761-70. doi: 10.1002\/cncr.24663)\n<br \/><\/br><\/p>\n<p>[3] Rajagopal, R., Khan, M., Lethbridge, R., Lee, G., Lee, S., Dyke, J., Fabian, V., McGrath, A., Taylor, M., Jacoby, P., Endersby, R., Nagabushan, S., &#038; Gottardo, N. G. (2023). Long-term outcomes of symptomatic optic pathway glioma: 32-year experience at a single Western Australian tertiary pediatric oncology center. Frontiers in oncology,\u00a013, 1157909. https:\/\/doi.org\/10.3389\/fonc.2023.1157909<br \/>\n<br \/><\/br><\/p>\n<p>[4] Roka, K., Scheinemann, K., Avula, S., Maduro, J. H., Thomale, U. W., Sehested, A., &#038; Schouten-Van Meeteren, A. Y. N. (2024). European standard clinical practice recommendations for primary pediatric low-grade gliomas. EJC Paediatric Oncology,\u00a04, 100169. https:\/\/doi.org\/10.1016\/j.ejcped.2024.100169<br \/>\n<br \/><\/br><\/p>\n<p>[5] Ryall, S., Tabori, U., &#038; Hawkins, C. (2020). Pediatric low-grade glioma in the era of molecular diagnostics. Acta neuropathologica communications,\u00a08(1), 30. https:\/\/doi.org\/10.1186\/s40478-020-00902-z<br \/>\n<br \/><\/br><\/p>\n<p>[6] Zelt S, Cooney T, Yu S, Daral S, Krebs B, Markan R, Manley P, Kieran M, Govinda Raju S. Disease burden and healthcare utilization in pediatric low-grade glioma: A United States retrospective study of linked claims and electronic health records. Neurooncol Pract. 2024 Apr;27(11):5. doi: 10.1093\/nop\/npae037. PMID: 39279771; PMCID: PMC11398936.<br \/>\n<br \/><\/br><\/p>\n<p>[7] Pediatric Brain Tumor Foundation. (2024). Pediatric Low-Grade Gliomas (PLGG)\u2014Voice of the Patient Report.<\/p>\n<\/p>\n                                                    <div class=\"cta-block hidden\" >\n                                                                                                            <\/div>\n                                                <\/div>\n                                            <\/div>\n                                        <\/div>\n                                    <\/div>\n                                                <\/div>\n                <\/div> \n            <\/div>\n        <\/div>\n    <\/section>\n    <!--Accordion Cards End Here-->\n","protected":false},"excerpt":{"rendered":"<p>Lily May est une petite fille de sept ans dynamique et d\u00e9termin\u00e9e, qui adore la gymnastique et le golf. Mais<\/p>\n","protected":false},"author":97,"featured_media":86659,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[6024],"tags":[],"class_list":["post-86630","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-oncology-fr","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>L\u2019histoire de Lily May : Vivre avec un gliome p\u00e9diatrique de bas grade - Global<\/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:\/\/www.ipsen.com\/fr\/actualites\/oncology-fr\/lhistoire-de-lily-may-vivre-avec-un-gliome-pediatrique-de-bas-grade\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"L\u2019histoire de Lily May : Vivre avec un gliome p\u00e9diatrique de bas grade - Global\" \/>\n<meta property=\"og:description\" content=\"Lily May est une petite fille de sept ans dynamique et d\u00e9termin\u00e9e, qui adore la gymnastique et le golf. 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