{
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  "sources": ["ssg:https://framerusercontent.com/modules/nyrg6rKtIbwNgia0nuXX/WhTfYvazZV5FqZasZPda/uyh9fG2p9-2.js"],
  "sourcesContent": ["import{jsx as e,jsxs as t}from\"react/jsx-runtime\";import{ComponentPresetsConsumer as i,Link as a}from\"framer\";import{motion as n}from\"framer-motion\";import*as r from\"react\";import{Youtube as o}from\"https://framerusercontent.com/modules/NEd4VmDdsxM3StIUbddO/bZxrMUxBPAhoXlARkK9C/YouTube.js\";export const richText=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})}),/*#__PURE__*/e(\"p\",{children:\"Every year, thousands of international students arrive in Canada, bringing with them dreams of a promising education and a brighter future. However, for many, especially those with chronic illnesses like sickle cell disease and thalassemia in Ontario, this dream quickly becomes overshadowed by the daunting reality of unclear health insurance coverage.\"}),/*#__PURE__*/e(\"p\",{children:\"International students bring diversity, innovation, and revenue to Canadian universities, yet many find themselves in precarious health situations, uncovered by unclear health insurance policies. This Winter, as campuses buzz back to life, the reality that some students are only a diagnosis away from financial ruin looms large.\"}),/*#__PURE__*/e(\"p\",{children:\"The Ontario Hemoglobinopathy Patient Association (OHPA), with its members, the Sickle Cell Awareness Group of Ontario (SCAGO) and the Thalassemia Foundation of Canada (TFC), recently highlighted this critical issue in a letter to the OmbudService for Life & Health Insurance (OLHI), University Health Insurance Plan (UHIP), Ontario Universities Application Centre (OUAC), Canadian Life and Health Insurance Association (CLHIA), and Council of Ontario Universities (COU) pointing out the urgent need for transparency and fairness in health insurance for international students, particularly those with chronic illnesses like sickle cell disease and thalassemia. Our letters highlighted that many of these students thought that the insurance provided through their school applications would be sufficient. However, upon arrival in Ontario and when facing a health crisis in a hospital, they discovered that they needed additional insurance to support their well-being while studying in Canada.\"}),/*#__PURE__*/e(\"p\",{children:\"The health insurance currently provided to these students is a labyrinth of exclusions, often unbeknownst to them until they face a medical emergency. For instance, many are unaware that their coverage does not extend to pre-existing conditions or that it lapses during extended academic breaks, leaving them vulnerable. This lack of clarity and support comes at a high cost, not only financially but also emotionally and academically, as students grapple with the stress of managing unexpected medical debts alongside their studies.\"}),/*#__PURE__*/e(\"p\",{children:\"Many times, the students cannot pay the high medical bills, and Canadian hospitals are left with unpaid bills. This experience and financial burden not only affects the students\u2019 mental and physical health but also exacerbates their medical conditions, creating a detrimental cycle of stress and ill health.\\xa0\"}),/*#__PURE__*/e(\"p\",{children:\"Additionally, the student with chronic illness requiring medical attention may not want to go back to the hospital due to financial strain, even when in dire health situations that require urgent care and/or hospitalization.\"}),/*#__PURE__*/e(\"p\",{children:\"OHPA's advocacy is a plea for clarity and action. It asks for simple, straightforward communication about what health insurance covers and what it doesn't. It demands guidance for purchasing adequate coverage and insists on explicit terms regarding the insurer's obligations. These are not unreasonable demands for basic rights that should be afforded to every student who chooses to study in Ontario.\"}),/*#__PURE__*/e(\"p\",{children:\"However, the response from UHIP and the other bodies, identified above, has been one of a push-around with one organization pointing to the next, and none of these bodies claiming responsibility nor intending to help resolve the issue! This is yet another reflection of a bureaucratic maze that prioritizes profit over people.\"}),/*#__PURE__*/e(\"p\",{children:\"It is important for all students, especially international students, to understand their financial obligations before they arrive in the country. Once students are already in Canada, they may find their insurance insufficient to cover healthcare costs. This pre-arrival awareness is critical, as it allows students to assess whether they can afford the potential expenses and whether to pursue their education in Canada or not.\\xa0\"}),/*#__PURE__*/e(\"p\",{children:\"As such, we are recommending a concerted effort to overhaul how health insurance for international students is handled, ensuring it is transparent and informative.\"}),/*#__PURE__*/e(\"p\",{children:\"As members of the academic and healthcare communities and as fellow citizens in general, we must hold these institutions accountable. We must advocate for policies that do not exploit any member of the community whether citizens or visitors. It\u2019s time for UHIP, OUAC, and the other stakeholders to step up and make the necessary changes.\"})]});export const richText1=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"The Sickle Cell Awareness Group of Ontario (SCAGO) is pleased with the news of CASGEVY  (Exagamglogene Autotemcel) receiving marketing authorization for the treatment of Sickle Cell and Thalassemia disorders in Canada.\"}),/*#__PURE__*/e(\"p\",{children:\"CASGEVY is Canada\u2019s first CRISPR-based gene-editing therapy to receive Health Canada\u2019s marketing authorization.\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CThis marketing authorization will improve the visibility of sickle cell and thalassemia disorders in Canada. Access by many to this cure therapy will also reduce the stigma and discrimination experienced by many living with hemoglobinopathies in the country\u201D, advised Lanre Tunji-Ajayi, M.S.M, President/CEO of the SCAGO.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"Press release from Vertex Inc.\"})}),/*#__PURE__*/t(\"p\",{children:[\"TORONTO, Sept. 25, 2024 /CNW/ \u2013 \",/*#__PURE__*/e(a,{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(n.a,{children:\"Vertex Pharmaceuticals Incorporated\"})}),\" (Nasdaq: VRTX) today announced Health Canada has granted Marketing Authorization for PrCASGEVY\\xae (exagamglogene autotemcel), an autologous genome edited hematopoietic stem cell-based therapy, for the treatment of patients 12 years of age and older with sickle cell disease (SCD) with recurrent vaso-occlusive crises (VOCs) or transfusion-dependent beta thalassemia (TDT). There are an estimated 2,000 patients eligible for CASGEVY in Canada, the majority of whom are living with SCD.\"]}),/*#__PURE__*/e(\"p\",{children:\"\u201CToday\u2019s marketing authorization for CASGEVY as Canada\u2019s first CRISPR-based gene-editing therapy is a historic moment,\u201D said Michael Siauw, General Manager at Vertex Pharmaceuticals (Canada) Incorporated. \u201CWe are excited for the potential of this one-time therapy for eligible sickle cell disease and transfusion-dependent beta thalassemia patients and are working closely with provincial, territorial and federal governments to facilitate access as rapidly as possible.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"This approval is based on the positive interim results from two global and ongoing clinical trials, CLIMB-121 in SCD and CLIMB-111 in TDT. The primary endpoint of being free from severe VOCs for at least 12 consecutive months or transfusion independence for at least 12 consecutive months was met in both trials. The safety profile is generally consistent with myeloablative conditioning with busulfan and hematopoietic stem cell transplant.\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CCASGEVY\u2019s approval is an exciting moment for two patient communities that have long awaited an innovative therapy that brings new hope and possibilities for those in need,\u201D said Kevin Kuo, M.D., Hematologist and Clinician Investigator in the Red Blood Cell Disorders Clinic at University Health Network, and Principal Investigator for the CLIMB-131 clinical program.\"}),/*#__PURE__*/t(\"p\",{children:[\"Vertex has submitted CASGEVY to both Canada\u2019s Drug Agency (CDA-AMC) and the Institut national d\u2019excellence en sant\\xe9 et en services sociaux (INESSS) in Qu\\xe9bec for Health Technology Assessments. For more information on the details of our CDA-AMC applications, including key milestones, please visit \",/*#__PURE__*/e(a,{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(n.a,{children:\"here\"})}),\" for our SCD submission and \",/*#__PURE__*/e(a,{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(n.a,{children:\"here\"})}),\" for our TDT submission.\"]}),/*#__PURE__*/e(\"p\",{children:\"The administration of CASGEVY requires specialized experience in stem cell transplantation; therefore, Vertex is working closely with provincial hospitals and health authorities to establish a network of authorized treatment centers (ATCs) to offer CASGEVY.\"}),/*#__PURE__*/t(\"p\",{children:[\"To read the full article, click \",/*#__PURE__*/e(a,{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(n.a,{children:\"here\"})})]})]});export const richText2=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"NEW YORK\u2013(BUSINESS WIRE)\u2013 Pfizer Inc. (NYSE: PFE) announced today that it is voluntarily withdrawing all lots of OXBRYTA \\xae (voxelotor) for the treatment of sickle cell disease (SCD) at this time, in all markets where it is approved. Pfizer is also discontinuing all active voxelotor clinical trials and expanding access programs worldwide.\"}),/*#__PURE__*/e(\"p\",{children:\"Pfizer\u2019s decision is based on the totality of clinical data that now indicates the overall benefit of OXBRYTA no longer outweighs the risk in the approved sickle cell patient population. The data suggest an imbalance in vaso-occlusive crises and fatal events that require further assessment. Pfizer has notified regulatory authorities about these findings and its decision to voluntarily withdraw OXBRYTA from the market and discontinue distribution and clinical studies while further reviewing the available data and investigating the findings.\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CThe safety and well-being of patients is of the utmost importance to Pfizer, and we believe this action is in the best interest of patients,\u201D said Aida Habtezion, Chief Medical Officer and Head of Worldwide Medical and Safety at Pfizer. \u201COur primary concern is for patients who suffer from SCD, which remains a very serious and difficult-to-treat disease with limited treatment options. We advise patients to contact their physicians to discuss alternative treatment while we continue to investigate the findings from our review of the data.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"Patients, physicians, pharmacists, or other healthcare professionals with additional questions about OXBRYTA should contact Pfizer Medical Information at 1-800-438-1985. The company will keep patients, regulatory authorities, investigators and clinicians informed about actions and appropriate next steps for OXBRYTA.\"}),/*#__PURE__*/e(\"p\",{children:\"The company does not anticipate that this event will impact its full-year 2024 financial guidance.\"}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Read full article here\"}),\": \",/*#__PURE__*/e(a,{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(n.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:\"This booklet, \u201CShort-Acting Opioid Analgesics for Pain Management\u201D was designed to provide additional information to youth with Sickle Cell Disease (SCD), and their families and caregivers, about the safe usage of short-acting opioid analgesics to relieve the pain associated with SCD while reducing medication side effects and associated risks.\"})});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(a,{href:\"https://sicklecellanemia.ca/schools\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(n.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(a,{href:\"https://www.cmajopen.ca/content/11/4/E725\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!0,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(n.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:\"Talking about Sickle Cell Disease (SCD) and Genotype testing\"})}),/*#__PURE__*/e(\"p\",{children:\"Many in the African and the Caribbean communities who have children or siblings living or dead from the complications of SCD do not want to talk about this disease, hence the necessity for us to let them know that they do not have to fill in their names on the questionnaires and for the interviewees, their names would not be mentioned as well. \u201CThere is a feeling of shame and it is looked at as a taboo within the community. It just makes others think that something is definitely wrong with your family and who will marry from a family that has such an incurable disorder.\"}),/*#__PURE__*/e(\"p\",{children:\"It is best to be left as a secret. It is not a nice thing\u201D. Said one of the African ladies interviewed\"}),/*#__PURE__*/e(\"p\",{children:\"Some patients believed that to find a partner to marry them, they have to hide this condition.\"}),/*#__PURE__*/e(\"p\",{children:\"Some of the participants that we interviewed believed that this secrecy stemmed from a culture whereby the less fortunate and the handicapped are looked down at. You have to be normal in every aspect to be accepted.\"}),/*#__PURE__*/e(\"p\",{children:\"A lady said \u201CWhen I arrived from Ghana, about 15 years ago, I was shocked to watch a lady come on live television and talked about how she had cancer\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"We will never talk about things like that! We need a lot of help in adapting to the culture of speaking about our problems and issues\u201D\"}),/*#__PURE__*/e(\"p\",{children:\" Another concern for many also is the fact that they felt that many Canadian doctors neither understand the disease nor the emotional stress suffered by those affected by it and their families.\"}),/*#__PURE__*/e(\"p\",{children:\"A 35-year-old patient said \u201CI was rejected by many doctors on arrival from Nigeria, about three years ago. They kept telling me that I should find another doctor as they do not understand my disease. I eventually have to look for a doctor whose background is African\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"She also mentioned that the ER medical professionals need to understand SCD more. On one of her emergency visits, she was left at the ER in excruciating pain for over 8 hours before finally being attended to. She added that a nurse told her that the reason she visits the hospital so often is that she is an addict who is now addicted to the medications. This shows the level of ignorance about sickle cell and the excruciating pain associated with it even among the medical professionals\u201D she said.\"}),/*#__PURE__*/e(\"p\",{children:\"It is our hope that this study will help both caregivers and the medical professionals understand that it is not that the SCD patients wanted a fix as they are not drug addicts but are living with a disease that affects minority groups and need to be understood properly if adequate help will be rendered to them.\"}),/*#__PURE__*/e(\"p\",{children:\"Some of the young people who completed the questionnaires and were also interviewed whose age range between 18-35 unbelievably do not know their genotype even though many of them have seen some individuals go through the painful crisis associated with this disease.\"}),/*#__PURE__*/e(\"p\",{children:\"Most of them believe that it is important to know one\u2019s genotype but has not gotten around to it, while others don\u2019t seem to think too much about it.\"}),/*#__PURE__*/e(\"p\",{children:\"A young man said\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CI am healthy and rarely fall sick, why should I worry about genotype testing?\u201D\"}),/*#__PURE__*/e(\"p\",{children:\" Another said \u201CIf you are man enough, you will not have children with SCD\u201D\"}),/*#__PURE__*/e(\"p\",{children:\"These responses clearly showed a lack of adequate education and knowledge on this matter.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"Racial Discrimination\"})}),/*#__PURE__*/e(\"p\",{children:\"Most of the participants being interviewed believed that provinces such as Ontario which is home to many diverse minority groups that are affected by (SCD) are not doing enough to reduce the incidence of this disease. They suggested that the Ontario government should stop seeing it as a minority issue but as an Ontario problem, after all, more sickle cell births mean more money spent by the Ministry of Health on patient care.\"}),/*#__PURE__*/e(\"p\",{children:\"Why not direct some resources to research, education, and support for the at-risk communities.\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CWe are part of this system and our issue should not be seen as just a minority issue,\u201D said an elderly interviewee.\"}),/*#__PURE__*/e(\"p\",{children:\" Asking those who know\u2014-\"}),/*#__PURE__*/e(\"p\",{children:\"Speaking to those who are suffering from SCD and those who have lost close relatives to this disease, the overall important perspective on this disease and \u2014-\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"What they will like to see includes the following:\"})}),/*#__PURE__*/e(\"p\",{children:\"\u201CEducating our young people to know their carrier status when it comes to genetic disorders such as SCD is important if we want to reduce the number of children being born with this disease\u201D.\"}),/*#__PURE__*/e(\"p\",{children:\" \u201CChildren born with SCD should be born out of parental choice and not ignorance\u201D.\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CAfrican-Canadians and other groups should be reached more readily when it comes to genetic counseling.\u201D\"}),/*#__PURE__*/e(\"p\",{children:\" \u201CMedical professionals, nurses, and other caregivers should receive ongoing training about this disease and how to deal with sufferers\u201D.\"}),/*#__PURE__*/e(\"p\",{children:\" \u201CEvery Ontario doctor should not turn patients away but strive to understand the disease\u201D.\"}),/*#__PURE__*/e(\"p\",{children:\" \u201CMore Organizations educating people on this disease should be adequately funded\u201D.\"}),/*#__PURE__*/e(\"p\",{children:\" \u201CThere should be a resource center or some sort of special counseling center for communities such as African & Indians whose background cultures and attitude towards many issues are different from the Canadian culture\u201D.\"}),/*#__PURE__*/e(\"p\",{children:\"\u201CMaybe there should be a group for spouses of those living with SCD\u201D \u201C\"}),/*#__PURE__*/e(\"p\",{children:\"Those with SCD should be supported more as many of us are highly educated with university degrees but could not hold jobs because of the frequent in/out hospital admission\u201D said a patient.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"strong\",{children:\"Comments:\"})}),/*#__PURE__*/e(\"p\",{children:\"Seed of life works to educate and inform the minority at-risk groups on SCD and how their future generations could avoid the agony of a disease that comes with complications such as acute chest syndrome, damage to the vital organs of the body including the heart, liver, kidney and the spleen. It also causes diabetes, high blood pressure, blindness, stroke, and premature death.\"}),/*#__PURE__*/e(\"p\",{children:\"SCD comes in different forms chiefly among which are Sickle Hemoglobin C (SC), Sickle Cell Anemia (SS), Sickle Beta-Plus Thalassemia, and Sickle Beta Zero Thalassemia.\"}),/*#__PURE__*/e(\"p\",{children:\"It affects people from the Sri-Lankan, Indian, Latin America, South America, Middle East, Caribbean, Asian, the Mediterranean as well as the African communities.\"}),/*#__PURE__*/e(\"p\",{children:\"Many are dying from its complications while more parents and caregivers are stressed as they helplessly watch their loved ones suffer from the pain & agony of this disease. Thus many wish that the doctors and caregivers understand this disease more.\"}),/*#__PURE__*/e(\"p\",{children:\"Seed of Life is working hard to reach at-risk groups affected by the different types of SCD with its educational campaign.\"})]});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(a,{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(n.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. 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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. 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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. 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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. All sickle cell conditions are inherited, just like blood types, hair, and eye color.\"})});export const richText52=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"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(\"p\",{children:\"The result of the test may show sickle cell trait (SCT) or some other hemoglobin variant. Your family doctor will discuss the significance of the result with you and if necessary refer you to a specialist for additional follow-up.\"})]});export const richText53=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Sickle Cell Trait is asymptomatic (meaning it does not cause symptoms) and as such many will not know that they carry the trait unless they get tested for it. 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If you and your partner both carry an abnormal copy of the gene, there is a 25% (1 in 4) chance that with each pregnancy, your baby will have SCD, a 25% chance they will have no abnormality, and a 50% chance they will inherit the condition as trait as well.\"}),/*#__PURE__*/e(\"p\",{children:/*#__PURE__*/e(\"br\",{className:\"trailing-break\"})}),/*#__PURE__*/e(\"img\",{alt:\"\",className:\"framer-image\",height:\"121\",src:\"https://framerusercontent.com/images/rybFptMVxKQUOVb0TyJEhdqwrk.jpg\",srcSet:\"https://framerusercontent.com/images/rybFptMVxKQUOVb0TyJEhdqwrk.jpg?scale-down-to=512 512w,https://framerusercontent.com/images/rybFptMVxKQUOVb0TyJEhdqwrk.jpg 624w\",style:{aspectRatio:\"624 / 242\"},width:\"312\"})]});export const richText54=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/t(\"ul\",{children:[/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Do you, or does someone you know have Sickle Cell Disease (SCD)?\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Do you feel like no one understands what it\u2019s like to struggle with sickle cell disease?\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Would you like to connect with others who will understand?\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Are there issues at school, work, or in the emergency room that cause you anxiety?\"})}),/*#__PURE__*/e(\"li\",{\"data-preset-tag\":\"p\",children:/*#__PURE__*/e(\"p\",{children:\"Do you need more information about sickle cell disease?\"})})]})});export const richText55=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"SCAGO is a membership-based, patient support, and advocacy organization. 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We understand your challenges and we are here to provide support.\"})});export const richText56=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"EDUCATION:\"}),/*#__PURE__*/e(\"br\",{}),\"We host Learning for Life Seminars for our members on topics such as \u201CPost-Secondary Planning\u201D and \u201Csickle cell disease Research Updates\u201D.\",/*#__PURE__*/e(\"br\",{}),\"We participate in Community Events, raise awareness about sickle cell disease and educate at-risk communities.\",/*#__PURE__*/e(\"br\",{}),\"We work with sickle cell disease experts to educate and update health care providers about managing sickle cell disease.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"GRANTS:\"}),/*#__PURE__*/e(\"br\",{}),\"We award annual Post-Secondary Scholarships to students with sickle cell disease who have secured a place in tertiary education.\",/*#__PURE__*/e(\"br\",{}),\"We also offer small emergency grants to patients, to help offset financial emergencies when their need is greatest.\"]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"SUPPORT\"}),/*#__PURE__*/e(\"br\",{}),\"We support and empower patients and their families through Adult Peer and Parents Support Networks. Our members meet bi-monthly but also have a vibrant online community support network. Our most recent program helps individuals and families access Respite Care in times of greatest need.\"]})]});export const richText57=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"LET US KNOW HOW WE CAN HELP YOU!\"}),/*#__PURE__*/e(\"br\",{}),\"Contact us by email: \",/*#__PURE__*/e(a,{href:\"mailto:info@sicklecellanemia.ca\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(n.a,{children:\"info@sicklecellanemia.ca\"})})]}),/*#__PURE__*/t(\"p\",{children:[/*#__PURE__*/e(\"strong\",{children:\"Sickle Cell Awareness Group of Ontario (SCAGO)\"}),/*#__PURE__*/e(\"br\",{}),\"235-415 Oakdale Rd. 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(a,{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(n.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(o,{...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. This article outlines the latest information on COVID-19 for SCD patients, including the importance of vaccination, protective measures, and managing health care needs during the pandemic. It also provides resources for patients and caregivers to stay informed about COVID-19.\"})});export const richText64=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"The University Health Network led the project on the elimination of race in estimates of kidney function. \"}),/*#__PURE__*/e(\"p\",{children:\"In Canada, Black people are at elevated risk of developing kidney disease, have more rapid progression of kidney disease, are referred later for kidney care, are less likely to receive home-based dialysis or a kidney transplant, and have higher mortality after kidney transplantation.\"}),/*#__PURE__*/e(\"p\",{children:\"The commentary published in the Canadian Medical Association Journal advises that widespread implementation in clinical practice of new equations for eGFR that omit a correction for race would be an important first step toward equitable delivery of kidney care for Black people in Canada. Read the full commentary below.\"})]});export const richText65=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Hydroxyurea is a drug (capsule) that was originally used to treat some forms of blood cancer (Leukaemia) and blood disorders that can later turn into Leukaemia. It has been used for over 15 years to treat sickle cell disease.\"}),/*#__PURE__*/e(\"p\",{children:\"Hydroxyurea works in a few different ways, but the main way is to increase your body\u2019s production of Fetal (baby) Hemoglobin.\"}),/*#__PURE__*/e(\"p\",{children:\"We know that this then protects you against sickle cell disease. It is a safe drug and there is no evidence to suggest increases the risk of cancer in patients with sickle cell disease. Like all drugs, it does have some side effects, and you need regular blood test monitoring. Also, unlike painkillers which you take when required, Hydroxyurea must be taken every day to be effective.\"}),/*#__PURE__*/e(\"p\",{children:\"Hydroxyurea is the only drug therapy available for sickle cell disease and has been shown to prolong survival, reduce pain episodes and some of the complications. Unless you have been told by a specialist that you have very mild sickle cell disease, you should consider going on the drug.\"})]});export const richText66=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"You are most likely to be offered Hydroxyurea because you have lots of painful crisis or Acute Chest Syndrome. 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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. The unnecessary deaths triggered discussions on how much, or how little, has changed when it comes to racism, and the demonstrations that started in Minneapolis where George Floyd died in police custody have spread all over the world, and even to our own country, Canada.\"})});export const richText75=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"The killings only demonstrate the inequalities faced by the racialized communities \u2013 especially Black communities \u2013 in every area of life, including inadequate access to health care, food, housing, and jobs, and of course the unfair target by the police bullet.\"}),/*#__PURE__*/e(\"p\",{children:\"It is our duty as a community to come together to take steps towards reforming and advocating for equality in access to healthcare and to also ensure that no one should be discriminated against based on the color of their skin, ancestry background, sexual orientation, health challenges, and where they live.\"}),/*#__PURE__*/e(\"p\",{children:\"According to PM Trudeau in a statement issued on June 2nd, Canadians must be aware of the challenges facing Black Canadians and other minorities and take steps to address them. There is systemic discrimination in Canada, which means our systems treat Canadians of color, Canadians who are racialized differently than they do others.\"}),/*#__PURE__*/e(\"p\",{children:\"In sickle cell disease, systemic racism has always been very real as individuals with the disease presenting in Canadian hospitals with vaso-occlusive crisis (painful episode representing the hallmark of the disease) are treated as drug seekers compared to their non-racialized counterparts presenting with pain.\"})]});export const richText76=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"This led SCAGO in 2019 to write Dr. Rueben Devlin who leads the Ontario Premier\u2019s council on improving health and ending hallway medicine that systemic racism is not only costing the system unnecessary health care dollars, it is costing many their lives and it is no longer acceptable! 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. Persons with SCD often experience significant pain, and other complications such as infections, strokes, and acute chest syndrome.\"})]});export const richText77=/*#__PURE__*/e(r.Fragment,{children:/*#__PURE__*/e(\"p\",{children:\"Since 2005, SCAGO has been creating and providing evidence-based supports and services to enhance the health and the quality of life of families with SCD. Its broader vision is for every Ontarian with SCD to have equitable access to comprehensive, standard care regardless of the place of residence in the province.\"})});export const richText78=/*#__PURE__*/t(r.Fragment,{children:[/*#__PURE__*/e(\"p\",{children:\"Health equity is about providing people with an equal chance of attaining their fullest health potential, including addressing the social determinants of health such as racism and poverty.\"}),/*#__PURE__*/t(\"p\",{children:[\"Sickle Cell Disease is the most common genetically inherited disease in Canada. 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. 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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(a,{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(n.a,{children:\"Dr. Roland B. Scott\"})}),\", \",/*#__PURE__*/e(a,{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(n.a,{children:\"Charles F. Whitten\"})}),\", and \",/*#__PURE__*/e(a,{href:\"https://cfmedicine.nlm.nih.gov/physicians/biography_262.html\",motionChild:!0,nodeId:\"uyh9fG2p9\",openInNewTab:!1,scopeId:\"contentManagement\",smoothScroll:!1,children:/*#__PURE__*/e(n.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. 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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. 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