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  "sourcesContent": ["import{jsx as e,jsxs as t}from\"react/jsx-runtime\";import{ComponentPresetsConsumer as i,Link as n}from\"framer\";import{motion as a}from\"framer-motion\";import*as r from\"react\";import{Youtube as s}from\"https://framerusercontent.com/modules/NEd4VmDdsxM3StIUbddO/bZxrMUxBPAhoXlARkK9C/YouTube.js\";export const richText=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Chaque ann\\xe9e, des milliers d'\\xe9tudiants internationaux arrivent au Canada, apportant avec eux des r\\xeaves d'une \\xe9ducation prometteuse et d'un avenir meilleur. Cependant, pour beaucoup, en particulier ceux atteints de maladies chroniques comme la dr\\xe9panocytose et la thalass\\xe9mie en Ontario, ce r\\xeave est rapidement assombri par la r\\xe9alit\\xe9 intimidante d'une couverture d'assurance sant\\xe9 peu claire.\\xa0\"}),/*#__PURE__*/e(\"p\",{children:\"Les \\xe9tudiants internationaux apportent diversit\\xe9, innovation et revenus aux universit\\xe9s canadiennes, mais beaucoup se retrouvent dans des situations de sant\\xe9 pr\\xe9caires, non couvertes par des politiques d'assurance-sant\\xe9 floues. Cet hiver, alors que les campus reprennent vie, la r\\xe9alit\\xe9 selon laquelle certains \\xe9tudiants ne sont qu'\\xe0 un diagnostic de la ruine financi\\xe8re est pr\\xe9dominante.\"}),/*#__PURE__*/e(\"p\",{children:\"L'Ontario Hemoglobinopathy Patient Association (OHPA), avec ses membres, le Groupe de Sensibilisation \\xe0 l\u2019An\\xe9mie Falciforme de l\u2019Ontario (GSAFO) et la Fondation canadienne de la thalass\\xe9mie (FCT), a r\\xe9cemment soulign\\xe9 cette question critique dans une lettre adress\\xe9e \\xe0 l\u2019Ombudsman des assurances des personnes (OAP), au R\\xe9gime d\u2019assurance maladie universitaire (RAMU), au Centre de demande d\u2019admission aux universit\\xe9s de l\u2019Ontario (OUAC), \\xe0 l\u2019Association canadienne des compagnies d\u2019assurances de personnes (ACCAP), ainsi qu\u2019au Council of Ontario Universities (COU), soulignant le besoin urgent de transparence et d'\\xe9quit\\xe9 dans l'assurance sant\\xe9 pour les \\xe9tudiants internationaux, en particulier ceux atteints de maladies chroniques comme la dr\\xe9panocytose et la thalass\\xe9mie. Nos lettres ont soulign\\xe9 que beaucoup de ces \\xe9tudiants pensaient que l'assurance fournie via leurs demandes d'admission serait suffisante. Cependant, \\xe0 leur arriv\\xe9e en Ontario et lorsqu'ils font face \\xe0 une crise de sant\\xe9 \\xe0 l'h\\xf4pital, ils d\\xe9couvrent qu'ils ont besoin d'une assurance suppl\\xe9mentaire pour soutenir leur bien-\\xeatre pendant leurs \\xe9tudes au Canada.\"}),/*#__PURE__*/e(\"p\",{children:\"L'assurance sant\\xe9 actuellement fournie \\xe0 ces \\xe9tudiants est un labyrinthe d'exclusions, souvent inconnues d'eux jusqu'\\xe0 ce qu'ils soient confront\\xe9s \\xe0 une urgence m\\xe9dicale. Par exemple, beaucoup ignorent que leur couverture ne s'\\xe9tend pas aux conditions pr\\xe9existantes ou qu'elle expire pendant les pauses acad\\xe9miques prolong\\xe9es, les laissant vuln\\xe9rables. Ce manque de clart\\xe9 et de soutien a un co\\xfbt \\xe9lev\\xe9, non seulement financi\\xe8rement mais aussi \\xe9motionnellement et acad\\xe9miquement, car les \\xe9tudiants luttent avec le stress de g\\xe9rer des dettes m\\xe9dicales impr\\xe9vues.\"}),/*#__PURE__*/e(\"p\",{children:\"Souvent, les \\xe9tudiants ne peuvent pas payer les factures m\\xe9dicales \\xe9lev\\xe9es, et les h\\xf4pitaux canadiens se retrouvent avec des factures impay\\xe9es. Cette exp\\xe9rience et ce fardeau financier affectent non seulement la sant\\xe9 mentale et physique des \\xe9tudiants mais exacerbent \\xe9galement leurs conditions m\\xe9dicales, cr\\xe9ant un cycle pr\\xe9judiciable de stress et de maladie\"}),/*#__PURE__*/e(\"p\",{children:\"De plus, l'\\xe9tudiant atteint de maladie chronique n\\xe9cessitant une attention m\\xe9dicale peut ne pas vouloir retourner \\xe0 l'h\\xf4pital en raison de contraintes financi\\xe8res, m\\xeame dans des situations de sant\\xe9 graves n\\xe9cessitant des soins urgents et/ou une hospitalisation.\"}),/*#__PURE__*/e(\"p\",{children:\"Le plaidoyer de l'OHPA est un appel \\xe0 la clart\\xe9 et \\xe0 l'action. Il demande une communication simple et directe sur ce que couvre l'assurance sant\\xe9 et ce qu'elle ne couvre pas. Il exige des conseils pour l'achat d'une couverture ad\\xe9quate et insiste sur des termes explicites concernant les obligations de l'assureur. Ce ne sont pas des demandes d\\xe9raisonnables pour des droits de base qui devraient \\xeatre accord\\xe9s \\xe0 chaque \\xe9tudiant qui choisit d'\\xe9tudier en Ontario.\"}),/*#__PURE__*/e(\"p\",{children:\"Cependant, la r\\xe9ponse de la RAMU et des autres organismes identifi\\xe9s ci-dessus a \\xe9t\\xe9 un renvoi de responsabilit\\xe9 d'une organisation \\xe0 l'autre, aucun de ces organismes n\u2019en revendiquant la responsabilit\\xe9 ni n'ayant l'intention d'aider \\xe0 r\\xe9soudre le probl\\xe8me ! Ceci est encore une autre r\\xe9flexion d'un labyrinthe bureaucratique qui privil\\xe9gie le profit sur les personnes.\"}),/*#__PURE__*/e(\"p\",{children:\"Il est important pour tous les \\xe9tudiants, en particulier les \\xe9tudiants internationaux, de comprendre leurs obligations financi\\xe8res avant leur arriv\\xe9e dans le pays. Une fois les \\xe9tudiants d\\xe9j\\xe0 au Canada, ils peuvent d\\xe9couvrir que leur assurance est insuffisante pour couvrir les co\\xfbts de soins de sant\\xe9. Cette prise de conscience avant l'arriv\\xe9e est cruciale, car elle permet aux \\xe9tudiants d'\\xe9valuer s'ils peuvent se permettre les d\\xe9penses potentielles de sant\\xe9 et s'ils doivent poursuivre ou non leur \\xe9ducation au Canada.\"}),/*#__PURE__*/e(\"p\",{children:\"Ainsi, nous recommandons un effort concert\\xe9 pour r\\xe9viser la mani\\xe8re dont l'assurance sant\\xe9 des \\xe9tudiants internationaux est g\\xe9r\\xe9e, afin de garantir qu'elle soit transparente et informative.\"}),/*#__PURE__*/e(\"p\",{children:\"En tant que membres des communaut\\xe9s acad\\xe9mique et de sant\\xe9, et en tant que citoyens en g\\xe9n\\xe9ral, nous devons tenir ces institutions responsables. Nous devons plaider pour des politiques qui n'exploitent aucun membre de la communaut\\xe9, qu'il s'agisse de citoyens ou de visiteurs. Il est temps pour la RAMU, l'OUAC et les autres parties prenantes de prendre des mesures et de faire les changements n\\xe9cessaires.\"})]});export const richText1=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Le Groupe de sensibilisation \\xe0 la dr\\xe9panocytose de l'Ontario (SCAGO) est heureux d'apprendre que CASGEVY (Exagamglog\\xe8ne Autotemcel) a re\\xe7u l'autorisation de mise sur le march\\xe9 pour le traitement des troubles de la dr\\xe9panocytose et de la thalass\\xe9mie au Canada.\"}),/*#__PURE__*/e(\"p\",{children:\"CASGEVY est la premi\\xe8re th\\xe9rapie d'\\xe9dition g\\xe9nique bas\\xe9e sur CRISPR au Canada \\xe0 recevoir l'autorisation de mise sur le march\\xe9 de Sant\\xe9 Canada.\"}),/*#__PURE__*/e(\"p\",{children:\"\\xab Cette autorisation de mise sur le march\\xe9 am\\xe9liorera la visibilit\\xe9 des troubles de la dr\\xe9panocytose et de la thalass\\xe9mie au Canada. L'acc\\xe8s de nombreux patients \\xe0 cette th\\xe9rapie curative r\\xe9duira \\xe9galement la stigmatisation et la discrimination v\\xe9cues par de nombreuses personnes vivant avec des h\\xe9moglobinopathies dans le pays \\xbb, a conseill\\xe9 Lanre Tunji-Ajayi, M.S.M, Pr\\xe9sident/CEO du SCAGO.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"Communiqu\\xe9 de presse de Vertex Inc.\"})}),/*#__PURE__*/t(\"p\",{children:[\"TORONTO, le 25 septembre 2024 /CNW/ \u2013 \",/*#__PURE__*/e(n,{href:\"https://c212.net/c/link/?t=0&l=en&o=4261259-1&h=1279907176&u=https%3A%2F%2Fwww.vrtx.ca%2F&a=Vertex+Pharmaceuticals+Incorporated\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"Vertex Pharmaceuticals Incorporated\"})}),\" (Nasdaq: VRTX) a annonc\\xe9 aujourd'hui que Sant\\xe9 Canada a accord\\xe9 une autorisation de mise sur le march\\xe9 pour PrCASGEVY\\xae (exagamglog\\xe8ne autotemcel), une th\\xe9rapie cellulaire bas\\xe9e sur des cellules souches h\\xe9matopo\\xef\\xe9tiques modifi\\xe9es g\\xe9n\\xe9tiquement, pour le traitement des patients \\xe2g\\xe9s de 12 ans et plus atteints de dr\\xe9panocytose (SCD) avec des crises vaso-occlusives r\\xe9currentes (VOCs) ou de thalass\\xe9mie b\\xeata d\\xe9pendante des transfusions (TDT). On estime que 2 000 patients sont \\xe9ligibles pour CASGEVY au Canada, dont la majorit\\xe9 vivent avec la SCD.\"]}),/*#__PURE__*/e(\"p\",{children:\"\\xab L'autorisation de mise sur le march\\xe9 d'aujourd'hui pour CASGEVY en tant que premi\\xe8re th\\xe9rapie d'\\xe9dition g\\xe9nique bas\\xe9e sur CRISPR au Canada est un moment historique \\xbb, a d\\xe9clar\\xe9 Michael Siauw, directeur g\\xe9n\\xe9ral de Vertex Pharmaceuticals (Canada) Incorporated. \\xab Nous sommes impatients de voir le potentiel de cette th\\xe9rapie unique pour les patients atteints de dr\\xe9panocytose \\xe9ligibles et de thalass\\xe9mie b\\xeata d\\xe9pendante des transfusions, et nous travaillons en \\xe9troite collaboration avec les gouvernements provinciaux, territoriaux et f\\xe9d\\xe9raux pour faciliter l'acc\\xe8s le plus rapidement possible. \\xbb\"}),/*#__PURE__*/e(\"p\",{children:\"Cette approbation est bas\\xe9e sur les r\\xe9sultats interm\\xe9diaires positifs de deux essais cliniques mondiaux en cours, CLIMB-121 en SCD et CLIMB-111 en TDT. L'objectif principal d'\\xeatre exempt de crises vaso-occlusives s\\xe9v\\xe8res pendant au moins 12 mois cons\\xe9cutifs ou d'\\xeatre ind\\xe9pendant des transfusions pendant au moins 12 mois cons\\xe9cutifs a \\xe9t\\xe9 atteint dans les deux essais. Le profil de s\\xe9curit\\xe9 est g\\xe9n\\xe9ralement coh\\xe9rent avec le conditionnement my\\xe9loablatif avec busulfan et la transplantation de cellules souches h\\xe9matopo\\xef\\xe9tiques.\"}),/*#__PURE__*/e(\"p\",{children:\"\\xab L'approbation de CASGEVY est un moment passionnant pour deux communaut\\xe9s de patients qui attendent depuis longtemps une th\\xe9rapie innovante qui apporte un nouvel espoir et de nouvelles possibilit\\xe9s pour ceux qui en ont besoin \\xbb, a d\\xe9clar\\xe9 Kevin Kuo, M.D., h\\xe9matologue et chercheur clinique \\xe0 la clinique des troubles des globules rouges de l'Universit\\xe9 Health Network, et chercheur principal pour le programme clinique CLIMB-131.\"}),/*#__PURE__*/t(\"p\",{children:[\"Vertex a soumis CASGEVY \\xe0 l'Agence canadienne des m\\xe9dicaments (CDA-AMC) et \\xe0 l'Institut national d'excellence en sant\\xe9 et en services sociaux (INESSS) au Qu\\xe9bec pour des \\xe9valuations des technologies de la sant\\xe9. Pour plus d'informations sur les d\\xe9tails de nos demandes CDA-AMC, y compris les \\xe9tapes cl\\xe9s, veuillez visiter \",/*#__PURE__*/e(n,{href:\"https://c212.net/c/link/?t=0&l=en&o=4261259-1&h=1988622198&u=https%3A%2F%2Fwww.cda-amc.ca%2Fexagamglogene-autotemcel-0&a=here\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"ici\"})}),\" pour notre soumission SCD et \",/*#__PURE__*/e(n,{href:\"https://c212.net/c/link/?t=0&l=en&o=4261259-1&h=3957493760&u=https%3A%2F%2Fwww.cda-amc.ca%2Fexagamglogene-autotemcel&a=here\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"ici\"})}),\" pour notre soumission TDT.\"]}),/*#__PURE__*/e(\"p\",{children:\"L'administration de CASGEVY n\\xe9cessite une exp\\xe9rience sp\\xe9cialis\\xe9e en transplantation de cellules souches ; par cons\\xe9quent, Vertex travaille en \\xe9troite collaboration avec les h\\xf4pitaux provinciaux et les autorit\\xe9s sanitaires pour \\xe9tablir un r\\xe9seau de centres de traitement autoris\\xe9s (ATC) pour offrir CASGEVY.\"}),/*#__PURE__*/t(\"p\",{children:[\"Pour lire l'article complet, cliquez \",/*#__PURE__*/e(n,{href:\"https://www.newswire.ca/news-releases/health-canada-grants-marketing-authorization-of-first-crispr-cas9-gene-edited-therapy-casgevy-r-exagamglogene-autotemcel-for-the-treatment-of-sickle-cell-disease-and-transfusion-dependent-beta-thalassemia-898047529.html\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"ici\"})})]})]});export const richText2=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"NEW YORK\u2013(BUSINESS WIRE)\u2013 Pfizer Inc. (NYSE: PFE) a annonc\\xe9 aujourd'hui qu'elle retire volontairement tous les lots d'OXBRYTA \\xae (voxelotor) pour le traitement de la dr\\xe9panocytose (DD) \\xe0 ce moment, dans tous les march\\xe9s o\\xf9 il est approuv\\xe9. Pfizer met \\xe9galement fin \\xe0 tous les essais cliniques actifs sur le voxelotor et \\xe9largit les programmes d'acc\\xe8s \\xe0 l'\\xe9chelle mondiale.\"}),/*#__PURE__*/e(\"p\",{children:\"La d\\xe9cision de Pfizer est fond\\xe9e sur la totalit\\xe9 des donn\\xe9es cliniques qui indiquent d\\xe9sormais que le b\\xe9n\\xe9fice global d'OXBRYTA ne l'emporte plus sur le risque dans la population de patients dr\\xe9panocytaires approuv\\xe9e. Les donn\\xe9es sugg\\xe8rent un d\\xe9s\\xe9quilibre dans les crises vaso-occlusives et les \\xe9v\\xe9nements fatals qui n\\xe9cessitent une \\xe9valuation plus approfondie. Pfizer a inform\\xe9 les autorit\\xe9s r\\xe9glementaires de ces constatations et de sa d\\xe9cision de retirer volontairement OXBRYTA du march\\xe9 et de cesser la distribution et les \\xe9tudes cliniques tout en r\\xe9examinant les donn\\xe9es disponibles et en enqu\\xeatant sur les constatations.\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CLa s\\xe9curit\\xe9 et le bien-\\xeatre des patients sont d'une importance capitale pour Pfizer, et nous croyons que cette action est dans le meilleur int\\xe9r\\xeat des patients,\u201D a d\\xe9clar\\xe9 Aida Habtezion, Chief Medical Officer et Responsable M\\xe9dical et de la S\\xe9curit\\xe9 Mondiale chez Pfizer. \u201CNotre principale pr\\xe9occupation est pour les patients qui souffrent de DD, qui reste une maladie tr\\xe8s grave et difficile \\xe0 traiter avec des options de traitement limit\\xe9es. Nous conseillons aux patients de contacter leurs m\\xe9decins pour discuter des traitements alternatifs pendant que nous continuons \\xe0 enqu\\xeater sur les constatations de notre examen des donn\\xe9es.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"Les patients, m\\xe9decins, pharmaciens ou autres professionnels de la sant\\xe9 ayant des questions suppl\\xe9mentaires sur OXBRYTA devraient contacter Pfizer Medical Information au 1-800-438-1985. La soci\\xe9t\\xe9 tiendra inform\\xe9s les patients, les autorit\\xe9s r\\xe9glementaires, les enqu\\xeateurs et les cliniciens des actions et des prochaines \\xe9tapes appropri\\xe9es concernant OXBRYTA.\"}),/*#__PURE__*/e(\"p\",{children:\"La soci\\xe9t\\xe9 ne pr\\xe9voit pas que cet \\xe9v\\xe9nement ait un impact sur ses pr\\xe9visions financi\\xe8res pour l'ann\\xe9e compl\\xe8te 2024.\"}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Lire l'article complet ici\"}),\": \",/*#__PURE__*/e(n,{href:\"https://www.pfizer.com/news/press-release/press-release-detail/pfizer-voluntarily-withdraws-all-lots-sickle-cell-disease\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"https://www.pfizer.com/news/press-release/press-release-detail/pfizer-voluntarily-withdraws-all-lots-sickle-cell-disease\"})})]})]});export const richText3=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"Ce livret, \\xab Analg\\xe9siques opio\\xefdes \\xe0 action courte pour la gestion de la douleur \\xbb, a \\xe9t\\xe9 con\\xe7u pour fournir des informations suppl\\xe9mentaires aux jeunes atteints de la maladie de Sickle Cell (SCD), ainsi qu'\\xe0 leurs familles et \\xe0 leurs soignants, concernant l'utilisation s\\xe9curitaire des analg\\xe9siques opio\\xefdes \\xe0 action courte pour soulager la douleur associ\\xe9e \\xe0 la SCD tout en r\\xe9duisant les effets secondaires des m\\xe9dicaments et les risques associ\\xe9s.\"})});export const richText4=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Your child has been diagnosed with Sickle Cell Disease (SCD), either by Newborn screening or by investigations for a medical problem. Knowing as much as possible about the disease will help you to better manage and reduce complications.\"}),/*#__PURE__*/e(\"p\",{children:\"The Sickle Cell Awareness Group of Ontario (SCAGO) works closely with healthcare professionals and the Ontario Ministry of Health and Long Term Care to ensure that individuals living with Sickle Cell Disease receive the best care possible.\"})]});export const richText5=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Sickle cell disease (SCD) is a genetic disease that affects hemoglobin in red blood cells. Hemoglobin is a protein that carries oxygen to all organs in the body.\"}),/*#__PURE__*/e(\"p\",{children:\"Sickle cell disease is a genetic disease that is passed on to a child from both the mother and the father of the child. Most parents who have a child with Sickle Cell Disease don\u2019t know they carry the gene for the disease because they have the trait \u2013 they have a normal hemoglobin gene, and a gene associated with sickle cell disease. Parents who carry a single gene associated with Sickle Cell Disease have no symptoms. If a child gets a Sickle Cell Disease gene for each parent, they will have the disease. Sickle cell disease is not infectious; you cannot catch it from someone.\"}),/*#__PURE__*/e(\"p\",{children:\"Sickle Cell Disease causes red blood cells to become stiff and crescent-shaped. These sickle cells are fragile; they break easily as they flow through blood vessels. They do not survive as long as normal red blood cells. People with sickle cell disease are anemic. This means they may look pale and feel weak. Sickled red cells stick to each other and to blood vessel walls. This can block the flow of blood to different parts of the body.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"em\",{children:/*#__PURE__*/e(\"strong\",{children:\"When blood vessels become blocked, pain and tissue injury can occur. Some tissues may become permanently damaged.\"})})}),/*#__PURE__*/e(\"img\",{alt:\"\",className:\"framer-image\",height:\"378\",src:\"https://framerusercontent.com/images/S2qC0OQ62NntTWahkpeGXO173A.png\",srcSet:\"https://framerusercontent.com/images/S2qC0OQ62NntTWahkpeGXO173A.png?scale-down-to=512 512w,https://framerusercontent.com/images/S2qC0OQ62NntTWahkpeGXO173A.png?scale-down-to=1024 1024w,https://framerusercontent.com/images/S2qC0OQ62NntTWahkpeGXO173A.png 1832w\",style:{aspectRatio:\"1832 / 757\"},width:\"916\"})]});export const richText6=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"There are different types of sickle cell disease. This depends on which genes have been passed from the parents to the child. The most common scenario is when both parents have sickle cell trait (AS). With each pregnancy, each parent will either pass the A or the S gene to his or her child.\"}),/*#__PURE__*/e(\"img\",{alt:\"\",className:\"framer-image\",height:\"390\",src:\"https://framerusercontent.com/images/siQbW5L6IJalVGFyWIxIZMlw6Vw.png\",srcSet:\"https://framerusercontent.com/images/siQbW5L6IJalVGFyWIxIZMlw6Vw.png?scale-down-to=512 512w,https://framerusercontent.com/images/siQbW5L6IJalVGFyWIxIZMlw6Vw.png?scale-down-to=1024 1024w,https://framerusercontent.com/images/siQbW5L6IJalVGFyWIxIZMlw6Vw.png 1059w\",style:{aspectRatio:\"1059 / 781\"},width:\"529\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"The most common types of sickle cell disease are:\"})}),/*#__PURE__*/t(\"ul\",{style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Sickle cell anemia or SS disease \"}),\"where a child inherits an S gene from each parent.\"]})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Sickle-hemoglobin C or SC disease \"}),\"where a child inherits an S gene from one parent and a C gene from the other\"]})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Sickle-thalassemia disease is \"}),\"where a child inherits an S gene from one parent and a thalassemia gene from the other.\"]})})]}),/*#__PURE__*/e(\"p\",{children:\"Parents with a trait usually have no symptoms. You will only know you carry a gene associated with sickle cell disease if you do a simple blood test. Your family doctor can help you with this.\"})]});export const richText7=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Many of these problems are preventable so it is very important to keep your follow-up appointments with your family doctor and hematologist.\"}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Anemia\"}),\" \u2013 children with Sickle Cell Disease have a low red blood count. This makes them tired easily.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Jaundice \"}),\"\u2013 a yellow color usually seen in the white of the eyes. This is usually a mild and common problem.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Infections \"}),\"can occur more often in children This is because their spleen (an organ in the tummy that filters blood to remove germs) does not work as well. If your child has a fever, it could be a sign of a serious problem. You should contact your doctor for advice.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Acute splenic sequestration \"}),\"\u2013 this happens when red blood cells become trapped in the spleen. The spleen can become very large. If too much blood becomes trapped, an urgent blood transfusion may be needed.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Pain \"}),\"is most often felt in the bones and joints but can happen in any part of the It happens when sickled red cells block blood flow to the tissues. This prevents oxygen and food from getting to the tissues. Young children may get dactylitis which is a painful swelling of the hands and feet.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Acute chest syndrome \"}),\"\u2013 this is similar to pneumonia (infection in the lungs). It can be treated in a hospital.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Peeing often \"}),\"\u2013 Children with Sickle Cell Disease drink a lot of water as it makes them feel better. They also make more urine (pee) so they need to go to the toilet often.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Stroke\"}),\" \u2013 Symptoms of a stroke include, weakness in the limbs, slurring of speech, or being These can be signs that blood flow to the brain is affected. This is a serious problem that needs to be treated quickly.\"]}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})})]});export const richText8=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:/*#__PURE__*/e(\"br\",{})}),\"At present, there is only one cure for sickle cell disease \u2013 bone marrow or stem cell transplantation. This is a potentially dangerous procedure that requires identifying a well-matched donor and is usually only performed in children. There is a great deal of progress being made in gene therapy, however, and if successful this will allow for cure in a much larger number of patients than are currently offered bone marrow or stem cell transplantation.\"]}),/*#__PURE__*/e(\"p\",{children:\"The first thing you can do is to make healthy lifestyle changes for you and your child:\"}),/*#__PURE__*/t(\"ul\",{style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Eat a balanced diet with lots of fruit and Your doctor may also prescribe folic acid (a vitamin), which helps to make new red blood cells.\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Drink lots of water \u2013 good hydration is important.\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Keep warm.\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Keep your doctor\u2019s appointments.\"})})]})]});export const richText9=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Prevent infection:\"}),/*#__PURE__*/e(\"br\",{}),\"Most children with sickle cell disease will need to take daily antibiotics. This is to help prevent serious infections. Some children can get fever even when taking antibiotics. If this happens speak to your doctor.\"]}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"em\",{children:\"Your child will also need special immunizations. Your hematologist will advise you of this.\"})}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Screening:\"}),/*#__PURE__*/e(\"br\",{}),\"Screening helps find problems before they become serious. These may include regular blood tests to check on your child\u2019s blood count. There is also a test called Transcranial Doppler or TCD. TCD helps to find children at the highest risk for a stroke.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Medication:\"}),/*#__PURE__*/e(\"br\",{}),\"Your doctor may prescribe a drug called hydroxyurea (hi-drox-ee-U-ree-ah). Hydroxyurea increases fetal (baby) hemoglobin, also known as Hemoglobin F (HbF) in red cells. This means they are less likely to sickle and block blood vessels. Children on hydroxyurea will need to be watched closely. It is important to keep doctor\u2019s appointments.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Surgery:\"}),/*#__PURE__*/e(\"br\",{}),\"Some children will need to have their spleen removed if they have more than one episode of acute splenic sequestration. Children can grow and thrive even without a spleen but they will need to take antibiotics for a long time.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Other treatments:\"}),/*#__PURE__*/e(\"br\",{}),\"Some children will need regular blood transfusions to prevent complications of the disease. Oxygen, IV fluids and referral to other health specialists such as a physiotherapist, a dietician, or psychologist may be helpful.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Remember\u2026\"}),/*#__PURE__*/e(\"br\",{}),\"Every child is different. Go to prescribed clinics and work closely with your child\u2019s specialist. Both you and your doctor will be able to understand how this disease will affect your child. You will also be able to find interventions that will help your child best.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"What else can you do?\"}),/*#__PURE__*/e(\"br\",{}),\"Children with sickle cell disease may miss school because of their health. Talk to teachers to make sure your child doesn\u2019t fall behind. Good education is needed for any child with a chronic illness (a disease that lasts for a long time) such as sickle cell disease. Most people living with sickle cell disease lead healthy and productive lives. Many go on to complete school and have families of their own. With your help, your child can achieve their full potential!\"]})]});export const richText10=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"h3\",{children:\"Good to Know! \u2013 Important Facts about Blood Transfusions\"}),/*#__PURE__*/e(\"img\",{alt:\"\",className:\"framer-image\",height:\"277\",src:\"https://framerusercontent.com/images/zT9eaAQLBB8tfnzl3uf89Ih2oYk.png\",srcSet:\"https://framerusercontent.com/images/zT9eaAQLBB8tfnzl3uf89Ih2oYk.png?scale-down-to=512 512w,https://framerusercontent.com/images/zT9eaAQLBB8tfnzl3uf89Ih2oYk.png 556w\",style:{aspectRatio:\"556 / 555\"},width:\"278\"}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/t(\"strong\",{children:[\"Why is phenotype-matched blood better for me?\",/*#__PURE__*/e(\"br\",{})]}),\"Phenotype-matched blood means that the blood has been matched to you much more carefully than is regularly performed. This reduces the chance of having a transfusion reaction and of developing an antibody to the blood you are transfused. However, in Canada, because most blood donors are from ethnic backgrounds different than Sickle Cell Disease patients, there is a limited supply of phenotypically- matched blood.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"How can I help increase phenotype-matched blood reserve?\"}),/*#__PURE__*/e(\"br\",{}),\"Canadian Blood Service (CBS) is looking for more blood donors from ethnic minorities. If you have friends or family who want to help people with Sickle Cell Disease, becoming a blood donor is a very practical, valuable, and worthwhile way to help. If you would like to arrange a blood donor drive or session in Ontario, SCAGO can help with this. Note that you cannot donate blood if you have Sickle Cell Disease. However, individuals with sickle cell traits can still donate.\"]})]});export const richText11=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{style:{\"--framer-font-size\":\"16px\",\"--framer-line-height\":\"24px\",\"--framer-text-color\":\"rgb(0, 0, 0)\"},children:\"Youth must also be educated on the importance of optimal disease management activities inclusive of taking prescribed medications, drinking fluids, avoiding extreme changes in temperature, eating a well-balanced diet, and engaging in behaviors that help prevent infections (e.g. hand washing, avoiding children who are sick).\"}),/*#__PURE__*/e(\"p\",{style:{\"--framer-font-size\":\"16px\",\"--framer-line-height\":\"24px\",\"--framer-text-color\":\"rgb(0, 0, 0)\"},children:\"It is also important to note that individuals with sickle cell disease are not cut out for strenuous, physical work- as such, emphasis must be placed on excelling academically.\"}),/*#__PURE__*/t(\"p\",{style:{\"--framer-font-size\":\"16px\",\"--framer-line-height\":\"24px\",\"--framer-text-color\":\"rgb(0, 0, 0)\"},children:[/*#__PURE__*/e(\"span\",{children:/*#__PURE__*/e(\"strong\",{children:\"For school-related resources on sickle cell disease, visit:\"})}),\"\\xa0\",/*#__PURE__*/e(n,{href:\"https://sicklecellanemia.ca/schools\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"https://sicklecellanemia.ca/schools\"})})]}),/*#__PURE__*/e(\"p\",{style:{\"--framer-font-size\":\"16px\",\"--framer-line-height\":\"24px\",\"--framer-text-color\":\"rgb(0, 0, 0)\"},children:/*#__PURE__*/e(\"em\",{children:\"This page is dedicated to youth in their journey with sickle cell disease.\"})})]});export const richText12=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"There is published evidence in several countries, including Canada, that patients with sickle cell disease (SCD) may receive disproportionally inadequate treatment or care in a hospital setting. \\xa0Hospital visits, including emergency department visits, are a common component of health care for individuals impacted by sickle cell disease. Ensuring that patients have access to timely interventions from physicians is critical due to the risk of life-threatening complications. \\xa0Approximately 58.3% of individuals with sickle cell disease in Canada, or 3500 people, reside in Ontario. \\xa0This study sought to gather deeper insights on patient perspectives of care received and to identify areas that could be targeted for improvement.\"})});export const richText13=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"An online survey was created via Survey Monkey and disseminated. 2500 patients and caregivers across Ontario were informed of the study via the Sickle Cell Awareness Group of Ontario (SCAGO) Newsletter mailing, postings of the study on the Sickle Cell Awareness Group of Ontario WhatsApp forum, posting at community health centers with sickle cell programs, and notification via other sickle cell organizations in Ontario.\"}),/*#__PURE__*/t(\"p\",{children:[\"From July 2019 to February 2020, participants were able to submit their health care experiences via the online\",/*#__PURE__*/e(\"strong\",{children:\"\\xa0\"}),\"survey. Results were summarized descriptively.\"]})]});export const richText14=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"A total of 66 responses were collected. For the 46 survey questions, the number of responses ranged from 10 to 66. Participants reported on experiences at 15 hospitals in Ontario. Respondents were 18 to 64 years of age. Twelve participants completed the survey on behalf of patients under the age of 18. 76% (16/21) participants reported on emergency department experiences. \\xa086% (18/21) of the reports were regarding care for pain management. With respect to waiting times over 1 hour, 31% reported waiting greater than 1 hour for nurse contact (5/16), 56% for physician contact (10/18), 50% for medication administration (8/16). \\xa060% (9/15) reported the first person encountered at triage was respectful, empathetic, and caring. 22% of respondents felt some form of stigmatization or fear of dying during their hospital experience (4/18). \\xa044% of respondents felt loneliness or helplessness during the hospital visit (7/16). 29% of respondents reported that the health care provider was extremely or very responsive to their concerns (5/17), 47% that the health care provider was somewhat responsive to their concerns (8/17), 24% that the care provider was not responsive to their concerns (4/17). \\xa060% of respondents reported that the health care providers were very or extremely knowledgeable (6/10), 30% of respondents reported the health care providers were somewhat knowledgeable (3/10), and 10% reported the health care provider as not all knowledgeable (1/10). 54% of respondents (22/41) reported that the quality of care received was below expectations, 34% (14/41) reported that the quality of care received met expectations and 12% (5/41) reported that the quality of care exceeded expectations.\"})});export const richText15=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"As patients with SCD face many life-threatening complications, access to high-quality and timely care is critical. \\xa0A survey on patient experiences received in Ontario hospitals identified potential areas for improvement in optimizing sickle cell disease care including wait times to receipt of care, and perceived health care provider responsiveness to patient concerns.\\xa0\\xa0The study team met with the hospitals identified as providing sub-optimal care in the survey.\\xa0 The team also met with some community hospitals that were not identified in the study but which a good number of SCD patients visit.\\xa0 All of the hospitals met with advice on their current and emerging strategies to address the gaps which will be shared with the patient community at the post-study summit for SCD Patient Community, Health Care Providers, and Healthcare System Leaders to help improve the confidence of the Ontario SCD community in Ontario hospitals.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"There are 3 components to the project:\"})}),/*#__PURE__*/t(\"ol\",{style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"em\",{children:\"Collecting patient perspectives on sickle cell care received, determining areas for improvement defined by patients\"})})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"em\",{children:\"Sharing the patient-derived information with the institutions which delivered the care\"})})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"em\",{children:\"Developing strategies jointly with the institutions to address identified areas of the deficit with the goal of improving the delivery of sickle cell care.\"})})})]})]});export const richText16=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"While it is recognized that the number of sickle cell patients in Canada is significant and growing, the absence of a unified patient registry has limited the ability of health care workers and policy analysts to determine how many individual patients there are.\"})});export const richText17=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"By cross-referencing inpatient and outpatient health services administrative databases maintained by Ontario hospitals with a) ICD codes indicating a diagnosis of sickle cell disease and b) individual Ontario Hospital Insurance Plan (OHIP) numbers, it will be possible to approximate the total number of patients residing in the province with a diagnosis of sickle cell disease.\"})});export const richText18=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"For the period ranging from FY 2007/08-2016/17, the Ontario Discharge Abstract Database and National Ambulatory Care Reporting System were queried for ICD9 code 2826 and ICD10 codes D570, D571, D572, and D578, while the Newborn Screening Ontario database was queried for diagnoses of Hb SS, Hb S\\xdf, SC, SE, and S/HPFH. Duplicate entries were eliminated through cross-referencing of OHIP numbers. The final report was anonymized to patient-level information but included basic demographic information obtained from the Registered Persons Database and Postal Code Conversion File.\"})});export const richText19=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"A total of 3 345 individuals with sickle cell disease were identified. The average age was 24 \\xb1 21 years and 56% were female. Patients resided within every provincial Local Health Integration Network (LHIN) area but were predominantly found in the areas surrounding Toronto and Ottawa. Income was reported as being in the lowest quintile for 40.5% of patients, and an average of 6.5 \\xb1 22 emergency room visits per patient was documented during the 10 year period of review.\"})});export const richText20=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"While a review of Health Services Administrative Databases can produce only limited clinical information, will not capture non-insured individuals (e.g., recent immigrants), and cannot account for patients who have died or left the province, it nonetheless allows for a rapid approximation of the number of sickle cell patients in Ontario. Similar methodology may be considered for other Canadian healthcare jurisdictions.\"})});export const richText21=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"em\",{children:\"This project was supported by funding from the Ontario Ministry of Health and Long-Term Care\"})}),/*#__PURE__*/t(\"p\",{children:[\"This study was published in CMAJ Open on August 15, 2023. Please refer to the full study at the link here: \",/*#__PURE__*/e(n,{href:\"https://www.cmajopen.ca/content/11/4/E725\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!0,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"https://www.cmajopen.ca/content/11/4/E725\"})})]}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})})]});export const richText22=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"em\",{children:\"The study was carried out by Sickle Cell Awareness Group of Ontario formerly known as Seed of life Philanthropic Organization Between August 2005 and March 2007.\"})}),/*#__PURE__*/e(\"p\",{children:\"What is Sickle Cell Disease (SCD): It is a genetic blood disorder that affects the red blood cells. It causes the red blood cells to become hard and sickle-shaped which makes it difficult for the blood cells to travel through the small blood vessels. Normal red blood cells are round and last approximately 120 days while the red blood cells of a sickle cell patient last for only 10-20 days.\"}),/*#__PURE__*/e(\"p\",{children:\"Sickle Cell Disease affects those whose ancestors are from Africa, the Caribbean, Latin America, South America, India, Asia, Middle-East& the Mediterranean.\"}),/*#__PURE__*/e(\"p\",{children:\"Globally, a quarter of a million children are born with the disease each year with the majority from Africa.\"}),/*#__PURE__*/e(\"p\",{children:\"With the growing number of people of African ancestry migrating and living in Canada, it is of paramount importance to understand how to reach these people along with the other ethnic groups affected by SCD.\"}),/*#__PURE__*/e(\"p\",{children:\"Unlike Cancer, SCD has been treated as a minority problem. This has hampered funding that could have helped to understand why it is rampant within some cultures more than the others even in the at-risk communities and to find ways to support those living with the disease.\"}),/*#__PURE__*/e(\"p\",{children:\"Very little study has been conducted if any at all on understanding these grassroots cultures.\"}),/*#__PURE__*/e(\"p\",{children:\"We found that many Africans for instance, are coming from cultures where any incidence perceived negative is considered shameful by the family and to avoid shame, many will hide the perceived negative event/occurrence. For instance, for many years it was believed that a marriage producing only female children is negative and the fault is the women. Many times, such a woman would be sent packing simply for not being able to produce a male child.\"}),/*#__PURE__*/e(\"p\",{children:\"Similarly, losing one\u2019s child while one is still alive is considered a curse by the gods.\"}),/*#__PURE__*/e(\"p\",{children:\"It is not surprising then to realize that having a disease such as sickle cell is unacceptable and considered shameful.\"}),/*#__PURE__*/e(\"p\",{children:\"Hence, many families refused to discuss their children\u2019s health deficiencies even with their extended family members and neighbors. This is for the fear that the children will be labeled as \u201Csoon to die\u201D and everybody will look down at their family as \u201Cthe family with the sick child\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"With no support group to help and no one that understands the stress, many carry the burdens of raising sickly child/children alone.\"}),/*#__PURE__*/e(\"p\",{children:\"This is the culture that many immigrants in Canada are coming from.\"}),/*#__PURE__*/e(\"p\",{children:\"To be able to reach both the young and the old from these cultures, we must understand who they are, their beliefs and it is only then that we will be able to let them know that there is no shame in having SCD while educating them on the choices available to them in order to prevent more incidences of the disease.\"}),/*#__PURE__*/e(\"p\",{children:\"It is important to let individuals from ethnic cultures with a high incidence of this disease understand that having genotype testing (Hemoglobin Electrophoresis) is a good way to know their sickle cell status. It will help to eliminate the ignorance and secrecy that surround this disease. Many will be more open and discussing sickle cell disease will no longer be such a taboo.\"}),/*#__PURE__*/e(\"p\",{children:\"Doctors, nurses, social workers, caregivers, counselors need to understand what the challenges of the people from different ethnic groups are and hear about their experiences & thoughts in order to be able to provide care that targets total needs.\"})]});export const richText23=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"In Mid-2005, the Sickle Cell Awareness Group of Ontario (SCAGO) started to actively visit churches and other venues where ethnic groups, both young and old are; in other to educate them on sickle cell disease.\"}),/*#__PURE__*/e(\"p\",{children:\"Various interactive forums & interviews were conducted and questionnaires were given out to be filled.\"}),/*#__PURE__*/e(\"p\",{children:\"From many of the responses, it was realized that many of the at-risk communities are not well understood by both the medical practitioners and the extended community.\"}),/*#__PURE__*/e(\"p\",{children:\"SCAGO realized that it must work with the community leaders, medical and allied health practitioners, and spiritual leaders if many in the At-Risk communities must be reached, educated, and supported.\"}),/*#__PURE__*/e(\"p\",{children:\"A few of the leaders that we are currently working with are:\"}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Spiritual & Community Leaders:\"}),/*#__PURE__*/e(\"br\",{}),/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})]}),/*#__PURE__*/t(\"ul\",{children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Rev. Audley James-Founder and Senior Pastor, Revival Time Tabernacle Senior \"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Apostle Igberase- Senior Pastor, Christ Chosen Church of God Pastor \"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Tayo Ojajuni- Senior Pastor, the Redeemed Church of God \"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Mr. Lawson- President, Nigerian Canadian Mosque.\"})})]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Medical Professionals:\"}),/*#__PURE__*/e(\"br\",{}),/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})]}),/*#__PURE__*/t(\"ul\",{children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Dr. Isaac Odame\"}),\" \u2013 Hematologist, Hospital for Sick Kids\"]})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Dr. Olaniyi Ajisafe\"}),\" \u2013 Family Physician, Safe Care Medical Center\"]})})]})]});export const richText24=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"August 2005-March 2007: Questionnaires were given out at different events and churches. Over 350 questionnaires are used for the purpose of this study, subjects\u2019 ages ranged from 18 to 75. This group includes youths, parents, and grandparents. Including their names are optional. Out of 350 questionnaires sampled, 200 have heard about SCD and genotype testing at one time or the other.\"}),/*#__PURE__*/e(\"p\",{children:\"150 have heard about SCD but hearing about genotype testing for the first time\"}),/*#__PURE__*/e(\"p\",{children:\"Out of the 200 people that knew about genotype testing, 105 know their genotype from their country while 95 have not been tested. These indicated that they will go for this testing at a later date due to the impact of the seminar/forum.\"}),/*#__PURE__*/e(\"p\",{children:\"Out of the 150 that are hearing about genotype testing for the first time, 120 decided that they will go for this testing while about 30 are indifferent.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"The locations/events where the questionnaire samples are collected\"})}),/*#__PURE__*/t(\"ul\",{style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Christ Chosen Church ofGod,\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"The Redeemed Christian Church ofGod,\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"The Nigerian CanadianMosque,\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Planet Africa Television\u2019s 2006 Forum on Sickle cell anemia,\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Malvern ChristianAssembly,\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"SCAGO\u2019s May 27th, 2006 Forum on Sickle Cell Disease & other communal Issues.\"})})]}),/*#__PURE__*/e(\"p\",{children:\"Questions asked were meant to show attitude towards SCD, the familiarity of subjects with genotype testing if they have had it done, and if not, has the seminar/event they are attending influenced them to want to get this testing done for both themselves and their children.\"}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"SafeCare Medical:\"}),/*#__PURE__*/e(\"br\",{}),\"SafeCare Medical included a hemoglobin electrophoresis test in the blood work of all patients for a period of three to six months. The test results identified 1 in 4 of individuals from specific African cultures as carriers of the sickle cell trait. Nigerians ranked highest on the list of carriers.\"]}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})})]});export const richText25=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"This booklet provides an overview of the questions asked in the questionnaire and the interview conducted with comments from individuals living with SCD, mothers living with sickle cell patients, youths who do not know their carrier status, carriers of the sickle cell genes, a family doctor as well as community and spiritual leaders from the At-Risk Communities of Jane/Finch and Scarborough areas.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"We hope that reading this study will:\"})}),/*#__PURE__*/t(\"ul\",{style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Help both parents and young people, especially from the African cultures where there is a strong shame stigma attached to this disease, that there is really no shame in having SCD or carrying the\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Help the health care professionals understand the needs of the different cultures represented in Canada as evident in what some considered shameful and hopefully help them overcome the unnecessary stigma while recommending adequate testing and care that will improve their state of\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Help many patients and their family members become more open and join various support\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Encourage many to get the Hemoglobin Electrophoresis testing\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Help turn SCD from a hush disease to an openly discussed\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Reduce the level of ignorance and stigma associated with SACD\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Help many immigrants from the At-Risk communities understand the culture of their new country and the need to freely adapt and assimilate the openness of Canadian Culture, especially where it comes to discussing\"})})]}),/*#__PURE__*/e(\"p\",{children:\"Our contact information is at the back and we hope that as many as needed genetic counseling and more information about sickle cell disease will feel free to contact us whenever they wish.\"})]});export const richText26=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"Parler de la dr\\xe9panocytose (SCD) et des tests de g\\xe9notype\"})}),/*#__PURE__*/e(\"p\",{children:\"Beaucoup dans les communaut\\xe9s africaines et des Cara\\xefbes qui ont des enfants ou des fr\\xe8res et s\u0153urs vivants ou d\\xe9c\\xe9d\\xe9s \\xe0 cause des complications de la SCD ne souhaitent pas parler de cette maladie, d'o\\xf9 la n\\xe9cessit\\xe9 de leur faire savoir qu'ils n'ont pas \\xe0 remplir leurs noms sur les questionnaires et que pour les personnes interrog\\xe9es, leurs noms ne seraient pas mentionn\\xe9s non plus. \u201CIl y a un sentiment de honte et c'est consid\\xe9r\\xe9 comme un tabou au sein de la communaut\\xe9. Cela fait juste penser aux autres que quelque chose ne va d\\xe9finitivement pas dans votre famille et qui voudra \\xe9pouser une famille qui a un tel trouble incurable.\"}),/*#__PURE__*/e(\"p\",{children:\"Il vaut mieux le garder secret. Ce n'est pas une chose agr\\xe9able.\u201D A d\\xe9clar\\xe9 l'une des femmes africaines interrog\\xe9es.\"}),/*#__PURE__*/e(\"p\",{children:\"Certains patients croyaient que pour trouver un partenaire qui les \\xe9pouse, ils devaient cacher cette condition.\"}),/*#__PURE__*/e(\"p\",{children:\"Certains des participants que nous avons interrog\\xe9s croyaient que ce secret d\\xe9coulait d'une culture o\\xf9 les moins fortun\\xe9s et les handicap\\xe9s sont m\\xe9pris\\xe9s. Vous devez \\xeatre normal sous tous les aspects pour \\xeatre accept\\xe9.\"}),/*#__PURE__*/e(\"p\",{children:\"Une dame a dit \u201CLorsque je suis arriv\\xe9e du Ghana, il y a environ 15 ans, j'ai \\xe9t\\xe9 choqu\\xe9e de voir une dame appara\\xeetre \\xe0 la t\\xe9l\\xe9vision en direct et parler de comment elle avait eu le cancer.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"Nous ne parlerons jamais de choses comme \\xe7a ! Nous avons besoin de beaucoup d'aide pour nous adapter \\xe0 la culture de la parole sur nos probl\\xe8mes et nos pr\\xe9occupations.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"Une autre pr\\xe9occupation pour beaucoup est \\xe9galement le fait qu'ils sentent que de nombreux m\\xe9decins canadiens ne comprennent ni la maladie ni le stress \\xe9motionnel ressenti par ceux qui en sont affect\\xe9s et leurs familles.\"}),/*#__PURE__*/e(\"p\",{children:\"Un patient de 35 ans a d\\xe9clar\\xe9 \u201CJ'ai \\xe9t\\xe9 rejet\\xe9 par de nombreux m\\xe9decins \\xe0 mon arriv\\xe9e du Nigeria, il y a environ trois ans. Ils continuaient \\xe0 me dire que je devrais trouver un autre m\\xe9decin car ils ne comprenaient pas ma maladie. J'ai finalement d\\xfb chercher un m\\xe9decin dont les origines sont africaines.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"Elle a \\xe9galement mentionn\\xe9 que les professionnels de la sant\\xe9 de l'urgence doivent mieux comprendre la SCD. Lors de l'une de ses visites d'urgence, elle a \\xe9t\\xe9 laiss\\xe9e aux urgences dans une douleur atroce pendant plus de 8 heures avant d'\\xeatre enfin prise en charge. Elle a ajout\\xe9 qu'une infirmi\\xe8re lui a dit que la raison pour laquelle elle visite si souvent l'h\\xf4pital est qu'elle est une toxicomane qui est maintenant accro aux m\\xe9dicaments. Cela montre le niveau d'ignorance sur la dr\\xe9panocytose et la douleur atroce qui y est associ\\xe9e, m\\xeame parmi les professionnels de sant\\xe9.\u201D a-t-elle d\\xe9clar\\xe9.\"}),/*#__PURE__*/e(\"p\",{children:\"Nous esp\\xe9rons que cette \\xe9tude aidera \\xe0 la fois les soignants et les professionnels de sant\\xe9 \\xe0 comprendre que ce n'est pas que les patients atteints de SCD voulaient une solution, car ils ne sont pas des toxicomanes, mais vivent avec une maladie qui affecte les groupes minoritaires et qu'il faut les comprendre correctement si une aide ad\\xe9quate doit leur \\xeatre apport\\xe9e.\"}),/*#__PURE__*/e(\"p\",{children:\"Certains des jeunes qui ont compl\\xe9t\\xe9 les questionnaires et ont \\xe9galement \\xe9t\\xe9 interrog\\xe9s, dont l'\\xe2ge varie entre 18 et 35 ans, ne savent pas incroyablement leur g\\xe9notype, m\\xeame si beaucoup d'entre eux ont vu des individus traverser les crises douloureuses associ\\xe9es \\xe0 cette maladie.\"}),/*#__PURE__*/e(\"p\",{children:\"La plupart d'entre eux croient qu'il est important de conna\\xeetre son g\\xe9notype mais ne s'y sont pas encore engag\\xe9s, tandis que d'autres ne semblent pas trop y penser.\"}),/*#__PURE__*/e(\"p\",{children:\"Un jeune homme a dit\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CJe suis en bonne sant\\xe9 et tombe rarement malade, pourquoi devrais-je m'inqui\\xe9ter des tests de g\\xe9notype ?\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"Un autre a dit \u201CSi tu es un homme, tu ne feras pas d'enfants avec la SCD.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"Ces r\\xe9ponses montrent clairement un manque d'\\xe9ducation et de connaissance ad\\xe9quates sur ce sujet.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"Discrimination raciale\"})}),/*#__PURE__*/e(\"p\",{children:\"La plupart des participants interview\\xe9s croyaient que des provinces comme l'Ontario, qui est le foyer de nombreux groupes minoritaires divers touch\\xe9s par la SCD, ne font pas assez pour r\\xe9duire l'incidence de cette maladie. Ils ont sugg\\xe9r\\xe9 que le gouvernement de l'Ontario devrait cesser de la consid\\xe9rer comme un probl\\xe8me de minorit\\xe9 mais comme un probl\\xe8me ontarien; apr\\xe8s tout, plus de naissances de dr\\xe9panocytose signifient plus d'argent d\\xe9pens\\xe9 par le minist\\xe8re de la Sant\\xe9 pour les soins des patients.\"}),/*#__PURE__*/e(\"p\",{children:\"Pourquoi ne pas diriger certaines ressources vers la recherche, l'\\xe9ducation et le soutien pour les communaut\\xe9s \\xe0 risque ?\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CNous faisons partie de ce syst\\xe8me et notre probl\\xe8me ne devrait pas \\xeatre consid\\xe9r\\xe9 comme juste un probl\\xe8me de minorit\\xe9,\u201D a d\\xe9clar\\xe9 un interview\\xe9 \\xe2g\\xe9.\"}),/*#__PURE__*/e(\"p\",{children:\" Demander \\xe0 ceux qui savent\u2014-\"}),/*#__PURE__*/e(\"p\",{children:\"En parlant de ceux qui souffrent de SCD et de ceux qui ont perdu des proches \\xe0 cause de cette maladie, la perspective g\\xe9n\\xe9rale sur cette maladie et \u2014-\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"Ce qu'ils souhaiteraient voir inclut les \\xe9l\\xe9ments suivants :\"})}),/*#__PURE__*/e(\"p\",{children:\"\u201C\\xc9duquer nos jeunes pour qu'ils connaissent leur statut de porteur en ce qui concerne les troubles g\\xe9n\\xe9tiques tels que la SCD est important si nous voulons r\\xe9duire le nombre d'enfants n\\xe9s avec cette maladie.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CLes enfants n\\xe9s avec la SCD devraient \\xeatre n\\xe9s par choix parental et non par ignorance.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CLes Afro-Canadiens et d'autres groupes devraient \\xeatre plus facilement accessibles en mati\\xe8re de conseil g\\xe9n\\xe9tique.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CLes professionnels de la sant\\xe9, les infirmi\\xe8res et les autres soignants devraient recevoir une formation continue sur cette maladie et sur la mani\\xe8re de traiter les malades.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CChaque m\\xe9decin de l'Ontario ne devrait pas refuser les patients mais s'efforcer de comprendre la maladie.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CD'autres organisations \\xe9duquant les gens sur cette maladie devraient \\xeatre financi\\xe8rement soutenues de mani\\xe8re ad\\xe9quate.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CIl devrait y avoir un centre de ressources ou une sorte de centre de counseling sp\\xe9cial pour des communaut\\xe9s telles que les Africains et les Indiens dont les cultures et attitudes de fond vis-\\xe0-vis de nombreux probl\\xe8mes sont diff\\xe9rentes de la culture canadienne.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CPeut-\\xeatre qu'il devrait y avoir un groupe pour les partenaires de ceux vivant avec la SCD.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CCeux avec la SCD devraient \\xeatre soutenus davantage car beaucoup d'entre nous sont tr\\xe8s instruits avec des dipl\\xf4mes universitaires mais ne peuvent pas garder un emploi en raison des fr\\xe9quentes admissions \\xe0 l'h\\xf4pital.\u201D a d\\xe9clar\\xe9 un patient.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"Commentaires :\"})}),/*#__PURE__*/e(\"p\",{children:\"Seed of life travaille \\xe0 \\xe9duquer et \\xe0 informer les groupes minoritaires \\xe0 risque sur la SCD et comment leurs g\\xe9n\\xe9rations futures pourraient \\xe9viter l'angoisse d'une maladie qui s'accompagne de complications telles que le syndrome thoracique aigu, des dommages aux organes vitaux du corps, y compris le c\u0153ur, le foie, les reins et la rate. Elle cause \\xe9galement le diab\\xe8te, l'hypertension, la c\\xe9cit\\xe9, l'accident vasculaire c\\xe9r\\xe9bral et la mort pr\\xe9matur\\xe9e.\"}),/*#__PURE__*/e(\"p\",{children:\"La SCD se pr\\xe9sente sous diff\\xe9rentes formes principalement parmi lesquelles se trouvent l'h\\xe9moglobine C dr\\xe9panocytaire (SC), l'an\\xe9mie falciforme (SS), la b\\xeata-thalass\\xe9mie dr\\xe9panocytaire, et la b\\xeata-z\\xe9ro-thalass\\xe9mie dr\\xe9panocytaire.\"}),/*#__PURE__*/e(\"p\",{children:\"Elle affecte des personnes originaires du Sri Lanka, d'Inde, d'Am\\xe9rique latine, d'Am\\xe9rique du Sud, du Moyen-Orient, des Cara\\xefbes, d'Asie, de la M\\xe9diterran\\xe9e ainsi que des communaut\\xe9s africaines.\"}),/*#__PURE__*/e(\"p\",{children:\"Beaucoup meurent \\xe0 cause de ses complications tandis que de plus en plus de parents et de soignants sont stress\\xe9s en voyant impuissants leurs proches souffrir de la douleur et de l'angoisse de cette maladie. Ainsi, beaucoup souhaitent que les m\\xe9decins et les soignants comprennent mieux cette maladie.\"}),/*#__PURE__*/e(\"p\",{children:\"Seed of Life travaille dur pour atteindre les groupes \\xe0 risque touch\\xe9s par les diff\\xe9rents types de SCD avec sa campagne \\xe9ducative.\"})]});export const richText27=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"Our Findings:\"})}),/*#__PURE__*/e(\"p\",{children:\"Many are ignorant about genotype testing and SCD.\"}),/*#__PURE__*/e(\"p\",{children:\"There is a very high incidence of the trait and the disease among the African and Caribbean populace living in Canada, thus it will be beneficial if more family doctors perform routine adult screening.\"}),/*#__PURE__*/e(\"p\",{children:\"This will help carriers to know the choices open to them and make informed decisions about procreation.\"}),/*#__PURE__*/e(\"p\",{children:\"It will also help mothers and patients to open up and discuss this disease more freely and join support groups.\"}),/*#__PURE__*/e(\"p\",{children:\"More family doctors recommending adult screening means more doctors that know about SCD and the at-risk communities.\"}),/*#__PURE__*/e(\"p\",{children:\"Education, Support, and Awareness\"}),/*#__PURE__*/e(\"p\",{children:\"Because individuals with SCD and their families need adequate support and understanding from the communities that they live in, we teamed up with the Canadian Blood Services to bring awareness to the ethnic groups to donate blood to those living with SCD and on continuous blood transfusion\"}),/*#__PURE__*/e(\"p\",{children:\"We educate family doctors that adult screening for SCD will help reduce the number of SCD births within the at-risk\"}),/*#__PURE__*/e(\"p\",{children:\"We are giving presentations about making informed choices and having all the necessary information before\"}),/*#__PURE__*/e(\"p\",{children:\"We have used various media outlets to create more awareness about this disease. Durham Chex 12 TV, Rogers TV, Global TV, CTV, CH CH TV, Planet Africa Television, Chin Radio, CHRY 105.5 FM, Share Magazine, Pride Magazine, various York Region Publications, GTA area publications, National Post, African Profile Magazine, etc are some of the\"}),/*#__PURE__*/e(\"p\",{children:\"We are working to bring the views of individuals with SCD from the at-risk communities to healthcare professionals and sickle cell\"}),/*#__PURE__*/e(\"p\",{children:\"We tell doctors and community groups about our organization so that they could refer people for genetic\"}),/*#__PURE__*/e(\"p\",{children:\"We have listed our organization on 211 for easy assessment for\"}),/*#__PURE__*/e(\"p\",{children:\"We will publish the study results in both professional journals and community newsletters so that many people will read\"}),/*#__PURE__*/e(\"p\",{children:\"Patients and their families need to know that they are not alone and need not suffer in silence anymore. Support groups are helpful\"}),/*#__PURE__*/e(\"p\",{children:\"Medical doctors and caregivers will receive adequate information and better information/education on caring for SCD\"}),/*#__PURE__*/e(\"p\",{children:\"That those in the at-risk communities need to know that in the absence of an available cure, making informed decisions through genetic carrier testing is action and the cure.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"What\u2019s next?\"})}),/*#__PURE__*/e(\"p\",{children:\"This study has led us to realize that more awareness is needed within the at-risk groups and reaching the minority groups especially the African and the South Asian communities who have the highest incidence of this disease has never been more important. We are currently working on recruiting more volunteers and providing them with adequate training.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"Sickle Cell Awareness Group of Ontario 415 Oakdale Rd. Unit 235\"})}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"North York, ON M3N 1W7\"})}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Tel: \"}),\"Toronto- (416) 745-4267\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Web: \"}),\"https://sicklecellanemia.ca/\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"E-mail:\"}),\" sicklecellawarenessontario@gmail.com\"]}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"Other Sickle Cell Organizations in Ontario:\"})}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Sickle Cell Association of Ontario\"}),\"  Tel: (416) 789-2855\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Camp Jumoke \"}),\" Tel: (416) 920-9213\"]}),/*#__PURE__*/e(\"p\",{children:\"Many thanks to all the participants, community leaders, spiritual leaders, medical professionals, patients, and caregivers who have been an integral part of our organization and work since its inception in the year 2005.\"}),/*#__PURE__*/e(\"p\",{children:\"Together we will keep educating & enriching lives one person/group at a time.\"})]});export const richText28=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Sickle Cell Disease (also called Sickle Cell Anemia) is a group of red blood cell disorders you have inherited and are born with. Sickle Cell Disease is caused by an abnormal form of Hemoglobin. This is the part of your red blood cell that carries oxygen around the body and keeps your vital organs working. In Sickle Cell Disease, the abnormal Hemoglobin (HbS) is not able to work properly. The red blood cells become stiff and block up the blood vessels in your body, causing pain and damage, and they also get destroyed quickly, leading to anemia and other complications. Currently, there is no universal cure for Sickle Cell Disease and approximately 4000 Ontarians have the disease.\"}),/*#__PURE__*/e(\"p\",{children:\"There is a substance in the red cell called hemoglobin. It carries oxygen from the air in our lungs to all parts of the body including the blood cells. One little change in this substance causes the hemoglobin to form long rods in the red cells when it gives away oxygen. These rigid rods change the red cells into a sickle shape instead of the normal round shape\"}),/*#__PURE__*/e(\"p\",{children:\"Normal red blood cells contain hemoglobin A. Hemoglobin S and hemoglobin C are abnormal types of hemoglobin. Normal red blood cells are soft and round and can squeeze through tiny blood tubes (vessels). Normally, red blood cells live for about 120 days before new ones replace them.\"}),/*#__PURE__*/e(\"p\",{children:\"People with sickle cell conditions make a different form of hemoglobin A called hemoglobin S (S stands for sickle). Red blood cells containing mostly hemoglobin S do not live as long as normal red blood cells (averagely about 16 days).\"})]});export const richText29=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"It is something you will have your whole life, and need to learn how to live with it, so that you can continue living as normally as possible, with schooling, work, and family life. As it is inherited, you also need to know your partner\u2019s sickle cell status as you could pass it onto your future children too.\"}),/*#__PURE__*/e(\"p\",{children:\"Types of SCD There are several types of SCD. The most common are Sickle Cell Anemia (SS), Sickle-Hemoglobin C Disease (SC), Sickle Beta-Plus Thalassemia, and Sickle Beta-Zero Thalassemia.\"})]});export const richText30=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Sickle Cell Trait (AS) is an inherited condition in which both hemoglobin A and S are produced in the red blood cells, always more A than S. Sickle cell trait is not a type of sickle cell disease. People with sickle cell trait are generally healthy. A carrier has one normal and one sickle hemoglobin gene. A carrier does not have, and will not develop sickle cell disease. All races should be screened for this hemoglobin at birth.\"}),/*#__PURE__*/e(\"p\",{children:\"A carrier of sickle cell disease is also said to have the sickle cell trait. This person has inherited a sickle cell gene from a parent, but does not have SCD and is not more likely to get sick than any other person. They do not need special medical care and will not develop SCD at any time in their life.\"}),/*#__PURE__*/e(\"p\",{children:\"Why is it helpful to know that I am a carrier of SCD, or whether my child is a carrier? Knowing whether you or your child has the sickle cell trait is important for several reasons. When you are ready to have a family, your partner can have carrier testing so that you know, as a couple, if there is a chance of having a child with SCD. By having this information, you can let your child know if he or she is a carrier of SCD in the future.\"})]});export const richText31=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"When a child has a copy of the sickle cell gene, it is very likely that one of the parents has a copy of the sickle cell gene, or:\"}),/*#__PURE__*/t(\"ul\",{style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Both parents are carriers\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"One parent actually has SCD\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"One parent is a carrier and the other has SCD\"})})]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"If I have more children, could they have Sickle Cell Disease?\"}),/*#__PURE__*/e(\"br\",{}),\"Most often when a child is a carrier of SCD, only one parent is a carrier and the chance to have a baby with SCD is very low\"]}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"When both parents are carriers, each pregnancy they have has:\"})}),/*#__PURE__*/t(\"ul\",{style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"1 in 4 (25%) chance of having SCD\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"1 in 2 (50%) chance of being a carrier (but not having SCD)\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"1 in 4 (25%) chance of not having SCD or being a carrier\"})})]}),/*#__PURE__*/e(\"p\",{children:\"You can have a blood test to find out if you are a carrier of SCD. If you want to have this test, talk to your healthcare provider. A carrier does not have, and will not develop sickle cell disease.\"}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Sickle Cell Trait in Ontario:\"}),/*#__PURE__*/e(\"br\",{}),\"A significant percentage of Ontarians of African descent may carry the sickle cell gene and in some cases, depending on the area of origin, the trait rate may be as high as 25%. People with SCT do not normally experience symptoms of SCD and do not need special medical care. Knowing your Sickle Cell status matters!\"]}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})})]});export const richText32=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Anyone can have SCD or trait including Caucasians but it is seen more in people from Africa, the Mediterranean, Caribbean, Middle East, South East Asia, Western Pacific Region, South America, and Central America. SCD runs in families and is caused by a problem with the hemoglobin gene. Genes are the instructions that tell our bodies how to grow and develop. Most people have two normal copies of the hemoglobin gene \u2013 one from their mother and one from their father. A person with SCD has two sickle hemoglobin genes, one from each parent. For a couple to have a child with sickle cell disease, both parents must be carriers. A carrier of SCD has one normal hemoglobin gene\"}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"What are the complications to look for?\"}),/*#__PURE__*/e(\"br\",{}),\"SCD causes problems in 2 ways, by the breakdown of the red blood cell (hemolysis) and by blocking the flow of blood in the blood vessels (vaso-occlusion). This most commonly causes pain, especially in the bones. Other painful complications include priapism (see below), damage to the shoulder and hip joints (avascular necrosis), chest pain (acute chest syndrome). There are also a lot of problems that may not be painful. These include damage to the lungs, heart (heart failure, pulmonary hypertension), kidney, liver and eyes, and also stroke, leg ulcers, infections. Because it can damage all of these body \u201Csystems\u201D, sickle cell disease is an example of a \u201Cmultisystem disorder\u201D.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"How can I prevent developing these complications?\"}),/*#__PURE__*/e(\"br\",{}),\"Many complications can be prevented or reduced by either regular blood transfusions or Hydroxyurea tablets. However, both of these have side effects and there are simple lifestyle changes that can make a big difference. These include regular exercise, a good diet, not smoking, and not drinking too much. Reducing the amount of stress in your life is also important, as is avoiding things that can provoke a painful crisis. Making sure you are up to date with vaccinations can help to prevent serious infections.By seeing your doctor in the clinic, when not in crisis, you have an opportunity to discuss these ways of coping with SCD and reducing complications\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Treatment of complications:\"}),/*#__PURE__*/e(\"br\",{}),\"Treatment of complications often includes antibiotics, pain management, intravenous fluids, blood transfusion, and surgery all backed by psychosocial support. Like all patients with chronic disease patients are best managed in a comprehensive multi-disciplinary program of care. Screening newborns for SCD are perhaps the first step to effective treatment of the disease. 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It provides valuable insights into the genetic nature of the condition, its complications, and the importance of awareness and support for affected individuals.\",/*#__PURE__*/e(\"br\",{}),/*#__PURE__*/e(\"br\",{}),\"Read the full article \",/*#__PURE__*/e(n,{href:\"https://www.healthing.ca/wellness/know-the-signs/sickle-cell-disease-anemia?utm_source=Sailthru&utm_medium=email&utm_campaign=Morning%20Checkup%20Newsletter%202022-06-16&utm_term=Healthing\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!0,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"here \"})}),\"or read below for a summary of the highlights. \"]})});export const richText37=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/t(\"p\",{children:[\"Sickle cell disease (SCD) is a genetic disorder that affects hemoglobin, the molecule in red blood cells responsible for carrying oxygen throughout the body. This condition leads to the production of abnormal, rigid, sickle-shaped red blood cells that can cause various health complications.\",/*#__PURE__*/t(\"strong\",{children:[/*#__PURE__*/e(\"br\",{}),/*#__PURE__*/e(\"br\",{}),\"Genetic Nature\"]}),\":\"]}),/*#__PURE__*/t(\"ul\",{children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"SCD is inherited and most commonly affects people of African, Mediterranean, Middle Eastern, and Indian ancestry.\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Both parents must carry the sickle cell trait for a child to be affected.\"})})]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Symptoms and Complications\"}),\":\"]}),/*#__PURE__*/t(\"ul\",{children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Common symptoms include severe pain episodes, fatigue, and anemia.\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Complications can include stroke, acute chest syndrome, organ damage, and increased risk of infections.\"})})]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Diagnosis and Treatment\"}),\":\"]}),/*#__PURE__*/t(\"ul\",{children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Diagnosis is typically confirmed through a blood test.\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Treatment focuses on managing symptoms and preventing complications, including pain management, blood transfusions, and medications like hydroxyurea.\"})})]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Living with SCD\"}),\":\"]}),/*#__PURE__*/t(\"ul\",{children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Regular medical care and healthy lifestyle choices are crucial.\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Patients should avoid triggers such as extreme temperatures and dehydration.\"})})]})]});export const richText38=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"Raising awareness about sickle cell disease is essential for early diagnosis and treatment. Support from healthcare providers, communities, and organizations can significantly improve the quality of life for those affected by SCD.\"})});export const richText39=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"Understanding and managing sickle cell disease is crucial for improving the quality of life for those affected. Awareness of its genetic nature, symptoms, and complications can lead to early diagnosis and effective treatment. Regular medical care and support from healthcare providers and communities play vital roles in managing the condition. By staying informed and proactive, individuals and families can better navigate the challenges of sickle cell disease, leading to healthier, more fulfilling lives.\"})});export const richText40=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"Sickle Cell Disease (also called Sickle Cell Anemia) is a hereditary genetic blood disease caused by an abnormal form of hemoglobin. Hemoglobin is the molecule in red blood cells that helps carry oxygen. To have this condition, you must inherit two abnormal copies of the gene, one from each parent. Due to the complications associated with the disease, most patients will know they have sickle cell disease by the time they reach adolescence. In many provinces, including Ontario, families of younger patients would have been told of the diagnosis as a result of newborn screening. However, individuals with the sickle cell trait, in which an abnormal gene is inherited from just one parent, are almost always asymptomatic, and many individuals may not know they carry the gene until they have a child born with sickle cell disease.\"})});export const richText41=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"When deprived of oxygen, red blood cells of a person with sickle cell disease become crescent-shaped (like the letter \u201CC\u201D) and are known as sickle cells due to their resemblance to an old farming tool known by that name. Sickle blood cells tend to stick together, form clumps and block blood vessels. This can result in pain, and can cause serious health problems including damage to internal organs such as the brain, eyes, lungs, liver, spleen, heart, kidney, bones and skin.\"}),/*#__PURE__*/e(\"p\",{children:\"Without long-term and comprehensive care, people with sickle cell disease can develop significant disability and premature death. Sickle cells are also \u201Cbrittle\u201D and break apart easily, and for this reason only last in circulation for 10-20 days, compared to 120 days for individuals with normal hemoglobin. The resulting hemolytic anemia can cause fatigue, gallstones and yellow discolouration of the eyes.\"}),/*#__PURE__*/e(\"img\",{alt:\"\",className:\"framer-image\",height:\"413\",src:\"https://framerusercontent.com/images/ObkzfnROZ5bUhNPdhgWVsNalBQ.png\",srcSet:\"https://framerusercontent.com/images/ObkzfnROZ5bUhNPdhgWVsNalBQ.png?scale-down-to=512 512w,https://framerusercontent.com/images/ObkzfnROZ5bUhNPdhgWVsNalBQ.png?scale-down-to=1024 1024w,https://framerusercontent.com/images/ObkzfnROZ5bUhNPdhgWVsNalBQ.png 1970w\",style:{aspectRatio:\"1970 / 827\"},width:\"985\"})]});export const richText42=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/t(\"p\",{children:[\"To know your sickle cell status, you will need to ask your family doctor for a requisition to the laboratory for hemoglobin electrophoresis testing. This test is covered by all provincial health plans in Canada and will therefore be provided without charge.\",/*#__PURE__*/e(\"br\",{}),/*#__PURE__*/e(\"br\",{}),\"The result of the test may show sickle cell disease, or sickle cell trait (SCT) or some other hemoglobin variant. 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If you are planning to have children, it is important that you both be tested, and that as a couple you seek genetic counselling if you are both carrying affected genes. Ignorance is no longer acceptable. Having a child with sickle cell disease should be an informed decision. Getting tested before having children gives you peace of mind and it is the smart thing to do.\"})]});export const richText44=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"The Sickle Cell Awareness Group of Ontario (SCAGO) in collaboration with various stakeholders continues to support schools in Ontario. 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Individuals who carry this gene have an asymptomatic condition known as sickle cell trait.\"}),/*#__PURE__*/e(\"p\",{children:\"It is estimated that over 150,000 people in Ontario, Canada carries a single sickle-cell gene and so have sickle cell trait. The majority of these individuals are not aware of their carrier status and are at risk of having a child affected with Sickle Cell Disease. It should be noted that sickle cell trait is not a disease, but a significant public health concern, as, without routine screening and awareness among the general public, the number of individuals affected by sickle cell disease will continue to rise. This will increasingly place a significant burden both on families and the healthcare system as a whole.\"})]});export const richText50=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Recent studies have shown that individuals with SCT, though they are generally healthy, need to be careful not to overstress themselves as severe dehydration and overexertion can lead to serious health issues, including sudden death.\"}),/*#__PURE__*/e(\"p\",{children:\"Authorities such as the American Society of Haematology do recommend global preventative strategies for all athletes, including ensuring adequate hydration and appropriate rest breaks.\"})]});export const richText51=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"No, unlike flu or HIV, you do not catch SCT. 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North York ON, M3N 1W7\",/*#__PURE__*/e(\"br\",{}),/*#__PURE__*/e(\"strong\",{children:\"Telephone:\"}),\" 416-745-4267\"]})]});export const richText58=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/t(\"p\",{children:[\"Blood transfusion is the main treatment option for some individuals with SCD and as such, it becomes important for peers and their families/caregivers to learn more about blood transfusion and support blood donor drives.\",/*#__PURE__*/e(n,{href:\"https://sicklecellanemiaca.live-website.com/wp-content/uploads/pdfs-pc/transfusion_support.pdf\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!0,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:/*#__PURE__*/e(\"br\",{})})})]})});export const richText59=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"div\",{className:\"framer-text-module\",style:{\"--aspect-ratio\":\"560 / 315\",aspectRatio:\"560 / 315\",height:\"auto\",width:\"100%\"},children:/*#__PURE__*/e(i,{componentIdentifier:\"module:NEd4VmDdsxM3StIUbddO/bZxrMUxBPAhoXlARkK9C/YouTube.js:Youtube\",children:t=>/*#__PURE__*/e(s,{...t,play:\"Off\",shouldMute:!0,thumbnail:\"Medium Quality\",url:\"https://youtu.be/jZnWd6cgGRo\"})})})});export const richText60=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"br\",{}),/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})]})]});export const richText61=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"Blood transfusion is the main treatment option for some individuals with Sickle Cell Disease (SCD) and as such, it becomes important for peers and their families/caregivers to learn more about blood transfusion and support blood donor drives.\"})});export const richText62=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})})]});export const richText63=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"Patients with sickle cell disease (SCD) should be particularly vigilant during the COVID-19 pandemic. 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The summit brought together stakeholders to discuss equitable care and treatment in SCD.\"})});export const richText73=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"Register for future events to stay informed on innovative treatments available for SCD.\"})});export const richText74=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"These last few weeks have become increasingly challenging as we saw social injustice with the tragic killing of George Floyd, Briana Taylor, and so many others; sparking global unrest and demonstrations. 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Currently, a working group comprising of representatives from different racialized communities is working on the next steps on this important health advocacy initiative. Racial injustice in health care is unhealthy and must be stopped!\"}),/*#__PURE__*/e(\"p\",{children:\"In healthy individuals, red blood cells are round and flexible and move freely through blood vessels to distribute oxygen to all parts of the body. Individuals with SCD have red blood cells which are \u201Csickle\u201D in shape (C-shaped), sticky, and inflexible. These structurally modified red blood cells have difficulty moving through the blood vessels and instead adhere to vessel walls, causing clots within the vessels, inflammation and limiting oxygen distribution to critical organs. 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It is a severe, congenital disorder of the red blood cells, affecting individuals from diverse ethnic backgrounds \u2013 Mediterranean, African, Caribbean, Middle East, South America, and South Asia. More than \",/*#__PURE__*/e(\"strong\",{children:\"6000 \"}),\"Canadians and \",/*#__PURE__*/e(\"strong\",{children:\"3500 \"}),\"Ontarians are affected, and that number is increasing annually in large part due to migration from countries with high disease prevalence, as well as natural increase within Canada from parents who carry sickle cell disease genetic traits.\\xa0\"]}),/*#__PURE__*/e(\"p\",{children:\"Individuals living with sickle cell disease experience chronic fatigue and episodic pain crises. Without proper, ongoing care, these individuals experience major health complications including organ failure, even at a young age. They also have compromised immune systems and are highly susceptible to infection. As such, they are at a higher risk of contracting dangerous communicable illnesses, such as COVID-19, and experiencing poorer outcomes compared to their peers who do not have sickle cell disease.\\xa0\"}),/*#__PURE__*/e(\"p\",{children:\"In Ontario and across the country, sickle cell disease predominantly affects individuals who identify as Black. The persistent health disparities experienced by racialized communities creates significant barriers to health equity for Ontario\u2019s Black community, particularly those individuals with sickle cell disease who depend substantially on access to Ontario\u2019s health and social services.\"}),/*#__PURE__*/e(\"p\",{children:\"Improving health outcomes for Ontario residents living with sickle cell disease will not only benefit the patients and their families by decreasing severe disease complications, and the need for hospitalization, but it will also improve their quality of life. It will increase their opportunities to contribute productively to society, while significantly decreasing the burden of costly in-patient care.\\xa0\"})]});export const richText79=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Ontarians with sickle cell disease continue to die from largely preventable complications of sickle cell disease. Under the circumstances, it is especially troubling to know that you, your child or family member with sickle cell disease may:\"}),/*#__PURE__*/t(\"ul\",{style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Be stigmatized in Emergency Departments, frequently labeled as \u201Cdrug-seeking\u201D, delayed and/or denied access to effective pain medications when presenting for medical treatment for pain crises;\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Have a life expectancy that is significantly reduced by about 25 to 30 years compared to other Ontarians without sickle cell disease;\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Have children born with sickle cell disease genetic traits, and not be aware that they too are at risk of having affected children of their own;\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Depending on the hospital of admission across the province, receive sub-optimal care and treatment resulting in preventable complications and possibly premature death;\\xa0\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Not have access to comprehensive care, including lifesaving treatments, drugs and knowledgeable care providers; and\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Often have quality of life that is lower than other Ontarians without sickle cell disease.\"})})]})]});export const richText80=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Mismanagement of sickle cell disease does not only impact the individuals and their families, but the healthcare system as a whole.\\xa0\"}),/*#__PURE__*/e(\"p\",{children:\"Multiple studies have shown that patients with sickle cell disease rely heavily on acute care medical services such as emergency room visits and inpatient hospitalization. Inpatient hospitalizations are particularly expensive.\\xa0\"}),/*#__PURE__*/t(\"p\",{children:[\"According to Mrs. Lanre Tunji-Ajayi, the president/CEO of the Sickle Cell Awareness Group of Ontario, one week of acute care (non-ICU) admission of an individual with sickle cell disease in an Ontario hospital costs the provincial government an average of \",/*#__PURE__*/e(\"strong\",{children:\"$20,000 \"}),\"and many individuals with sickle cell disease are admitted at an average of \",/*#__PURE__*/e(\"strong\",{children:\"6-12\"}),\" times annually.\\xa0\"]}),/*#__PURE__*/t(\"p\",{children:[\"The length of hospitalization may range from one to several weeks of admission/year. \",/*#__PURE__*/e(\"strong\",{children:\"Using conservative figures, non-ICU admission 6 times/year, lasting one week per admission, may cost upwards of $120,000 per patient/year and upwards of $9 million for a patient\u2019s lifetime; \"}),\"and this figure excludes the societal costs of unemployment and decreased work productivity. As the number of patients with sickle cell disease in Ontario continues to grow, the associated burden on the medical system is becoming considerable.\"]}),/*#__PURE__*/t(\"p\",{children:[\"However, the good news is that there is an enormous opportunity to decrease the health care costs of patients with sickle cell disease while simultaneously improving clinical outcomes. Shifting the care of patients with sickle cell disease from an inpatient to outpatient setting, primarily through the provision of basic preventative health xmaintenance and the use of hydroxyurea, can reduce total healthcare costs by\",/*#__PURE__*/e(\"strong\",{children:\" 20%\"}),\".\"]})]});export const richText81=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Given the provincial government\u2019s responsibility in ensuring equitable access to health by all of its citizens, we implore the Ministry of Health and the newly created Ontario Health to work with the Sickle Cell Awareness Group of Ontario (SCAGO) in ensuring that, (similar to Hemophilia Ontario), individuals with sickle cell disease receive appropriate and timely intervention that:\"}),/*#__PURE__*/t(\"ul\",{style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"reduces preventable complications, stigma and discrimination in Ontario hospitals\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"improves their physical and mental well-being.\"})})]})]});export const richText82=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"h3\",{children:/*#__PURE__*/e(\"strong\",{children:\"Bridging the Health Equity Gap for Sickle Cell Disease in Ontario\"})}),/*#__PURE__*/e(\"p\",{children:\"Given the provincial government\u2019s responsibility in ensuring equitable access to health by all of its citizens, we implore the Ministry of Health and the newly created Ontario Health to work with the Sickle Cell Awareness Group of Ontario (SCAGO) in ensuring that, (similar to Hemophilia Ontario), individuals with sickle cell disease receive appropriate and timely intervention that:\"}),/*#__PURE__*/t(\"ul\",{style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"reduces preventable complications, stigma and discrimination in Ontario hospitals\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"improves their physical and mental well-being.\"})})]})]});export const richText83=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Health Equity and the Social Determinants of Health: A Role for the Medical Profession, Canadian Medical Association, 2013, policybase.cma.ca/en/viewer?file=%2Fdocuments%2FPolicyPDF%2FPD13-03.pdf#search=&phrase=false.\\xa0\"}),/*#__PURE__*/t(\"ol\",{style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Kim, E., Graves, E., Tunji-Ajayi, L. & Pendergrast, J. (2018). How Many Sickle Cell Disease Patients Are There in Ontario? Results of a Query of Health Services Administrative Databases. Retrieved from: https://sicklecellanemia.ca/how-many-sickle-cell-disease-patients-are-there-in-ontario\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Yusuf HR, Atrash HK, Grosse SD, Parker CS, Grant AM. Emergency department visits made by patients with sickle cell disease: a descriptive study, 1999-2007. Am J Prev Med. 2010; 38:S536\u2013541\"})})]}),/*#__PURE__*/e(\"ol\",{start:\"4\",style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Mvundura M, Amendah D, Kavanagh PL, Sprinz PG, Grosse SD. Health care utilization and expenditures for privately and publicly insured children with sickle cell disease in the United States. Pediatr Blood Cancer. 2009; 53:642\u2013646\"})})}),/*#__PURE__*/e(\"ol\",{start:\"5\",style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Amendah DD, Mvundura M, Kavanagh PL, Sprinz PG, Grosse SD. Sickle cell disease-related pediatric medical expenditures in the U.S. Am J Prev Med. 2010; 38:S550\u2013556\"})})}),/*#__PURE__*/t(\"ol\",{start:\"6\",style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Raphael JL, Mei M, Mueller BU, Giordano T. High resource hospitalizations among children with vaso-occlusive crises in sickle cell disease. Pediatr Blood Cancer. 2012; 58:584\u2013590\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Raphael JL, Dietrich CL, Whitmire D, Mahoney DH, Mueller BU, Giardino AP. Healthcare utilization and expenditures for low-income children with sickle cell disease. 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Acute care utilization and rehospitalizations for sickle cell disease. JAMA. 2010; 303:1288\u20131294\"})})}),/*#__PURE__*/e(\"ol\",{start:\"11\",style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Boulet SL, Yanni EA, Creary MS, Olney RS. Health status and healthcare use in a national sample of children with sickle cell disease. Am J Prev Med. 2010; 38:S528\u2013535\"})})}),/*#__PURE__*/e(\"ol\",{start:\"12\",style:{\"--framer-font-size\":\"16px\",\"--framer-text-alignment\":\"left\",\"--framer-text-color\":\"rgb(0, 0, 0)\",\"--framer-text-stroke-width\":\"0px\",\"--framer-text-transform\":\"none\"},children:/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Wang WC, Oyeku SO, Luo Z, Boulet SL, Miller ST, Casella JF, Fish B, Thompson BW, Grosse SD; BABY HUG Investigators. \u201CHydroxyurea is associated with lower costs of care of young children with sickle cell anemia.\u201D Pediatrics. 2013;132:677-83\"})})})]});export const richText84=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"In the spirit of Black History Month, let\u2019s set aside an epoch of reflection and engage in the celebration of Black heritage and the achievements in sickle cell disease.\"}),/*#__PURE__*/e(\"p\",{children:\"The month of February serves to honor the rich tapestry of Black history and culture and provides an opportunity to spotlight the health disparities and challenges experienced by the Black community, particularly those related to sickle cell disease (SCD).\"}),/*#__PURE__*/e(\"p\",{children:\"Sickle cell disease is more than a medical condition; it\u2019s a thread woven in the fabric of Black history, symbolizing a journey of resilience, struggle, and the ongoing fight for equitable healthcare.\"}),/*#__PURE__*/e(\"p\",{children:\"Our organization, the Sickle Cell Awareness Group of Ontario (SCAGO), stands at the forefront of this battle, advocating for enhanced care, education, and support for those affected. As we engage in events and discussions celebrating Black History Month, let\u2019s integrate the narrative of sickle cell disease, highlighting the importance of early diagnosis, innovative treatments, and the critical role of vaccines in preventing life-threatening complications associated with this disease.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})})]});export const richText85=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"The year 2023 witnessed the approval of two innovative cures for sickle cell disease- Casgevy in the UK, USA, and Bahrain; and Lyfgenia in the USA. This advancement will forever change the face of the disease and its impact on the lives of those affected.\"}),/*#__PURE__*/t(\"p\",{children:[\"Our focus should also be on recognizing the pioneers who have made significant strides in sickle cell disease research and treatment in the Americas, many of whom come from our communities, such as \",/*#__PURE__*/e(n,{href:\"https://thedig.howard.edu/all-stories/howard-university-salutes-black-history-legend-dr-roland-b-scott-pioneering-sickle-cell-researcher\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"Dr. Roland B. Scott\"})}),\", \",/*#__PURE__*/e(n,{href:\"https://www.sicklecelldisease.org/project/charles-f-whitten-black-history-month-scd-pioneers-2019/\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"Charles F. Whitten\"})}),\", and \",/*#__PURE__*/e(n,{href:\"https://cfmedicine.nlm.nih.gov/physicians/biography_262.html\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"Dr. Clarice Reid\"})}),\".\"]}),/*#__PURE__*/e(\"p\",{children:\"In addition to these notable figures, we must celebrate Canadian heroes who have been instrumental in advancing the cause of SCD within our national context. Hon. Jean Augustine, a trailblazer in Canadian politics, was the first person to introduce sickle cell disease to the House of Commons, bringing much-needed attention and legislative focus to this condition. Her efforts laid the groundwork for subsequent advocacy and policy development in Canada.\"}),/*#__PURE__*/e(\"p\",{children:\"Senator Jane Cordy has also made a significant impact by introducing the first SCD bill passed in the Canadian Senate, marking a historic milestone in our collective effort to combat sickle cell disease. Senator Cordy\u2019s dedication to healthcare advocacy and her pioneering work in sickle cell legislation has been pivotal in promoting awareness and supporting the community affected by SCD.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})})]});export const richText86=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"This month, let\u2019s renew our commitment to breaking down barriers in healthcare, promoting SCD research, and ensuring that the voices of those living with SCD are heard and honored. By doing so, we pay tribute to our heritage and take a significant step towards a future where every individual with SCD has access to the care and support they deserve.\"}),/*#__PURE__*/e(\"p\",{children:\"In solidarity and with heartfelt dedication to our cause,\"}),/*#__PURE__*/e(\"p\",{children:\"Mrs. Lanre Tunji-Ajayi, M.S.M\"}),/*#__PURE__*/e(\"p\",{children:\"President/CEO, Sickle Cell Awareness Group of Ontario\"})]});export const richText87=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/t(\"p\",{children:[\"This resource was designed for emergency department staff and providers. In an easy to read and digestible format, it summarizes the pain management portion of a Position Statement from the Canadian Paediatric Society (CPS) titled \u201CAcute complications in children with sickle cell disease: Prevention and management\u201D (\",/*#__PURE__*/e(n,{href:\"https://bit.ly/3FKTfx3\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!0,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"Available online here\"})}),\")\"]})});export const richText88=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(n,{href:\"https://kidsinpain.ca/wp-content/uploads/2023/11/SCDPoster-EN.pdf\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"PDF Download\"})})}),/*#__PURE__*/e(\"img\",{alt:\"\",className:\"framer-image\",height:\"607\",src:\"https://framerusercontent.com/images/AXrCLQgnMOCgFOSkqIaJ9OmK6k.png\",srcSet:\"https://framerusercontent.com/images/AXrCLQgnMOCgFOSkqIaJ9OmK6k.png?scale-down-to=1024 661w,https://framerusercontent.com/images/AXrCLQgnMOCgFOSkqIaJ9OmK6k.png 785w\",style:{aspectRatio:\"785 / 1215\"},width:\"392\"})]});export const richText89=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/t(\"p\",{children:[\"Sickle cell disease is an inherited condition that alters the shape and functionality of red blood cells that affects more than \",/*#__PURE__*/e(n,{href:\"https://www.nhlbi.nih.gov/health/sickle-cell-disease#:~:text=Sickle%20cell%20disease%20is%20a%20group%20of%20inherited%20red%20blood%20cell%20disorders%20that%20affect%20hemoglobin%2C%20the%20protein%20that%20carries%20oxygen%20through%20the%20body.%20The%20condition%20affects%20more%20than%20100%2C000%20people%20in%20the%20United%20States%20and%2020%20million%20people%20worldwide.%C2%A0%20%C2%A0%20%C2%A0%20%C2%A0%20%C2%A0%20%C2%A0\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"20 million individuals worldwide\"})}),\". Instead of being round and flexible, the red blood cells of individuals with SCD are shaped like crescent moons or sickles. This irregular shape makes it difficult for these cells to navigate through small blood vessels, leading to episodes of pain and damage to vital organs.\"]}),/*#__PURE__*/e(\"p\",{children:\"Teens often face unique challenges as they navigate the transition from childhood to adulthood. They grapple not only with the typical issues of adolescence but also with the physical and emotional toll of managing a chronic illness.\"})]});export const richText90=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/t(\"p\",{children:[\"Increasing awareness of Sickle Cell Disease is important to enhance the well-being of individuals impacted by this condition. Empowering teens with knowledge, including its origins, \",/*#__PURE__*/e(n,{href:\"https://medlineplus.gov/genetics/condition/sickle-cell-disease/#inheritance:~:text=Inheritance-,Collapse%20Section,they%20typically%20do%20not%20show%20signs%20and%20symptoms%20of%20the%20condition.,-Other%20Names%20for\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"inheritance patterns\"})}),\", and physiological effects, equips them with the tools to take better control of their health. Informed individuals are better prepared to manage the challenges associated with SCD effectively.\"]})});export const richText91=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"For teens living with sickle cell, taking charge of their health is fundamental. By embracing this responsibility, they can enhance their overall happiness and fulfillment.\"}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Education: \"}),\"Understanding the underlying causes and symptoms, helps young adults to be more proactive in recognizing any warning signs or triggers. Engaging in open discussions with their healthcare team allows them to actively participate in creating a personalized treatment plan that suits their personal needs and goals.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Preparation:\"}),\" Teenagers should be well-prepared for emergencies, knowing when to seek immediate medical attention and how to \",/*#__PURE__*/e(n,{href:\"https://mastersglobal.com/news/pain-management-suffering-pain-is-complicated/\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(a.a,{children:\"manage pain\"})}),\" or other symptoms during such situations. Developing a crisis plan with their caregivers can provide them with a sense of security and confidence in handling unexpected challenges.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Exercise:\"}),\" Engaging in regular exercise helps improve cardiovascular health, strengthens muscles, and enhances overall well-being. Participating in appropriate physical activities also promotes a positive mindset and helps teens build resilience to face the challenges that come with the condition.\"]}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"em\",{children:\"Tip: Always speak with your healthcare professionals and know your limits.\"})}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Nutrition:\"}),\" Proper nutrition and hydration are important components of managing SCD. A balanced diet rich in nutrients helps support overall health and can reduce the risk of complications. Staying well-hydrated helps to prevent the occurrence of painful vaso-occlusive crises and maintains adequate blood flow throughout the body.\"]})]});export const richText92=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Building supportive communities is essential for teens living with Sickle Cell Disease to thrive and lead fulfilling lives.\"}),/*#__PURE__*/e(\"p\",{children:\"Schools play a role in helping these teenagers. The special requirements and difficulties individuals with the condition meet need to be communicated to teachers and staff. 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