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28 Hacks That Can Make Going to College With a Chronic Illness Easier

The Mighty

Heading off to college can be a stressful and chaotic time on its own – but throw a chronic illness (or a few) into the mix and it becomes even trickier to manage all the demands of your day-to-day life. High stress levels or a lack of sleep can easily exacerbate your condition and lead to flare-ups, so it’s important to balance your schedule, plan ahead and make sure you have any accommodations you need to be successful. To help y...

3 Tips about Sickle Cell Disease – Every emergency provider needs to know

Centers for Disease Control and Prevention

Children and adults with sickle cell disease (SCD) often require care in the emergency department (ED) of hospitals and clinics for health issues related to SCD. The ED may be a patient’s only option for health care when symptoms, such as pain crises, cannot be managed at home or when a patient does not have access to a healthcare provider who specializes in treating SCD. The Sickle Cell Data Collection (SCDC) program found...

3 Tips for Safe Use of Medicines for People With Sickle Cell Disease

Centers for Disease Control and Prevention

People with sickle cell disease (SCD) are often prescribed medicines for common complications of SCD. If your provider prescribes you medicine, take the following steps: Ask your provider about the benefits and risks of your medicine Although medicines can have lifesaving benefits, they sometimes come with risks. It’s important to learn about both before you start taking your medicine. Take you...

5 Steps to Safer Blood Transfusions if You Have Sickle Cell Disease

Centers for Disease Control and Prevention

If you have sickle cell disease (SCD), you may need one or more blood transfusions (healthy blood from a donor put into your body) during your lifetime. During a blood transfusion, your blood and the donated blood must have matching antigens, or special proteins on the surface of each red blood cell. If the antigens in your blood and the donated blood do not match, your immune system (your body’s ability to fight germs) may attack th...

5 Tips To Help Prevent Infection

Centers for Disease Control and Prevention

Common illnesses, like the flu, can quickly become dangerous for a person with sickle cell disease. The best defence is to take simple steps to help prevent infections. 5 tips to help prevent infection include:   Washing Hands Washing your hands is one of the best ways to help prevent getting an infection. People with sickle cell disease, their family, and other...

504 plan for education because of sickle cell disease

St. Jude Children's Research Hospital

Your child qualifies for an education plan called a Section 504 plan because of sickle cell disease. What is a Section 504 plan? Section 504 is part of a federal law called the Rehabilitation Act of 1973. It allows students with medical concerns to get “accommodations” to help them learn better. Accommodations are changes made in the classroom to raise the chances that your child will do well in school....

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“Waiting for a Miracle”: Spirituality/Religiosity in Coping With Sickle Cell Disease

Revista Brasileira de Enfermagem

Objective: To understand spirituality/religiosity as experienced by people with sickle cell disease, and its influence on coping with the disease. Method: A qualitative, descriptive, and exploratory study conducted in the State of Bahia. Twenty-nine respondents participated in semi-structured interviews. Content analysis was used to analyze the empirical material. Results:...

A Clinically Meaningful Fetal Hemoglobin Threshold for Children With Sickle Cell Anemia During Hydroxyurea Therapy

American Journal of Hematology

Hydroxyurea has proven clinical benefits and is recommended to be offered to all children with sickle cell anemia (SCA), but the optimal dosing regimen remains controversial. Induction of red blood cell fetal hemoglobin (HbF) by hydroxyurea appears to be dose-dependent. However, it is unknown whether maximizing HbF% improves clinical outcomes. HUSTLE (NCT00305175) is a prospective observational study with a primary goal of describing the long-...

A Complex Interface: Exploring Sickle Cell Disease From a Parent’s Perspective, After Moving From Sub-Saharan Africa to North America

Pediatric Hematology and Oncology

Introduction: Sickle cell disease (SCD) is an inherited, multi-system, chronic disease with the highest prevalence affecting people of Sub-Saharan African descent. While major advances in SCD care have occurred over the last few decades in many African countries these advances are not readily available. Prior literature from Ghana and Kenya describe stigma, despair, and economic burden as well as hope when a child has S...

A CRISPR Focus on Attitudes and Beliefs Toward Somatic Genome Editing From Stakeholders Within the Sickle Cell Disease Community

Genetics in Medicine

Purpose: Genome editing holds both tremendous therapeutic promise and significant potential risk. Sickle cell disease (SCD), the most commonly inherited blood disorder, is a frontline candidate for the clinical applications of this tool. However, there is limited knowledge of patient community values and concerns regarding this new technology. This study aims to investigate the perspectives of three key decision-makers...

A Genome-Wide Association Study Identifies Blood Disorder–Related Variants Influencing Hemoglobin A1c With Implications for Glycemic Status in U.S. Hispanics/Latinos

Diabetes Care

OBJECTIVE We aimed to identify hemoglobin A1c (HbA1c)-associated genetic variants and examine their implications for glycemic status evaluated by HbA1c in U.S. Hispanics/Latinos with diverse genetic ancestries. RESEARCH DESIGN AND METHODS We conducted a genome-wide association study (GWAS) of HbA1c in 9,636 U.S. Hispanics/Latinos without diabetes from the Hispanic Community Health Study/Study of Latino...

A missed opportunity to address a national shame: the case of sickle cell disease in the United States

JAMA Pediatrics

In November 2018, the Centers for Medicare & Medicaid Services (CMS) announced there would be no changes to the core set of 25 pediatric quality measures on which states report performance for the Medicaid program.1 In doing so, CMS ignored the almost unanimo...

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American Society of Hematology 2020 Guidelines for Sickle Cell Disease: Management of Acute and Chronic Pain

Blood Advances

Objective: These evidence-based guidelines developed by the American Society of Hematology (ASH) are intended to support patients, clinicians, and other health care professionals in pain management decisions for children and adults with SCD. Methods: ASH formed a multidisciplinary panel, including 2 patient representatives, that was thoroughly vetted to minimize bias from conflicts of int...

APHON/ASPHO Policy Statement for the Transition of Patients With Sickle Cell Disease From Pediatric to Adult Health Care

Journal of Pediatric Oncology Nursing

With advances in medical care, the majority of children with sickle cell disease are surviving to adulthood. Patients, families, and providers now face the need for this growing population to move from pediatric- to adult-focused care. In order to facilitate a successful transfer to adult health care, and prepare young adults for greater independence, it is recommended that all pediatric patients with sickle cell disease receive transition prepar...

Guideline on the management of acute chest syndrome in sickle cell disease

British Journal of Haematology

Sickle cell disease (SCD) affects 12 000–15 000 individuals in the UK. Whilst homozygous SCD (sickle cell anaemia — HbSS) is the most common and severe genotype, and is where most of the evidence exists, this guidance should be used for all genotypes of SCD. Acute chest syndrome (ACS) is defined as an acute illness characterized by fever and/or respiratory symptoms, accompanied by a new pulmonary infiltrate on chest X-ray (Charache et al, 19...

Guidelines for the use of hydroxycarbamide in children and adults with sickle cell disease: A British society for haematology guideline

British Journal of Haematology

Sickle cell disease (SCD) is a generic term for an inherited group of disorders that includes homozygous sickle cell anaemia (SS), sickle cell/haemoglobin C (SC) sickle cell/β-thalassemia (S/β thal) and other compound heterozygous conditions. SCD is characterised by the presence of the mutated β‐globin gene, HBBs (also termed βs‐globin). On de‐oxygenation, this forms a polymeric structure r...

Guidelines on Red Cell Transfusion in Sickle Cell Disease Part II: Indications for Transfusion

British Society for Haematology

Red cell transfusion has an important role in the management of sickle cell disease (SCD) in both emergency and elective settings. However, because of insufficient randomised data, it is not always clear when or how to use red cell transfusion. A companion guideline, Guidelines on red cell transfusion in sickle cell disease Part I: principles and laboratory aspects, addresses the general principles of transfusion practice in SCD (Davis et al, BJH...

Guidelines on Red Cell Transfusion in Sickle Cell Disease. Part I: Principles and Laboratory Aspects

British Society for Haematology

Blood transfusion in the management of sickle cell disease (SCD) can be lifesaving and reduces disability. However, it may cause morbidity, including alloimmunisation and iron overload (Ballas 2001, Darbari, et al 2006, Rosse, et al 1990, Vichinsky, et al 1990), and mortality (Royal and Seeler 1978, Serjeant 2003). A paucity of randomised controlled clinical trials has resulted in wide variations in clinical practice. However, recent randomise...

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A Comparison of an Individualized and Weight-Based Opioid Protocols for the Treatment of Vaso-Occlusive Episodes in the Emergency Department

American Society of Hematology

Introduction: Vaso-occlusive episodes are the most common complication experienced by individuals with sickle cell disease (SCD). Treatment in an emergency department (ED) is often required and significant variability in care exists. In 2014, NHLBI published evidence based recommendations suggesting treatment with either an individualized opioid dosing or standard weight-based protocol; however the supporting evidence grade was Consensus – P...

A Developmental Examination of Pain Among Youth with Sickle Cell Disease

American Society of Hematology

Introduction: Sickle cell disease (SCD) related pain is a difficult and challenging clinical problem that has significant negative effects on youth’s health-related quality of life (Dampier et al., 2010; Walco & Dampier, 1990). Proper assessment and management of pain in the pediatric population is essential to both improving wellbeing of youth with SCD, and minimizing the development of chronic pain as patients t...

A Five Fold Decrease in Admissions for Uncomplicated Vaso-Occlusive Crisis and Other Benefits from Care in Infusion Clinics: Results from the Escaped Trial

American Society of Hematology

Patients with sickle cell disease (SCD) suffer from frequent vaso-occlusive crises (VOC), the leading cause of hospitalization and ED visits for these patients. Infusion centers (IC) are alternatives to ED care and may provide patients with a better care experience. We previously demonstrated in a single center that the use of such centers provides more rapid pain control and can decrease the risk of a hospital admission. For the management of...

A multi-center, phase-2 trial of losartan for the nephropathy of sickle cell anemia

The American Society of Pediatric Hematology/Oncology

Background: Sickle nephropathy (SN) is a common and progressive manifestation of sickle cell anemia (SCA). Albuminuria indicates glomerular injury and portends renal failure. In a murine model of SCA, we found that increased TGF-β signaling underlies SN, and its downregulation by losartan, an angiotensin receptor blocker, reduced albuminuria and SN progression. The effect of losartan in humans with SCA is unknown....

A Multicenter Phase II Trial of Unrelated Donor Reduced Intensity Bone Marrow Transplantation for Children with Severe Sickle Cell Disease (SCURT): Results of the Blood and Marrow Transplant Clinical Trials Network (BMT CTN 0601) Study

American Society of Hematology

Background: Children with severe sickle cell disease (SCD) experience organ damage, poor quality of life, and a risk of premature mortality. Allogeneic bone marrow transplantation (BMT) halts disease progression when stable donor erythropoiesis is established. Myeloablative conditioning (MAC) followed by HLA matched sibling donor BMT is effective, but most patients with SCD lack a matched sibling donor and long term side effects...

A randomized controlled trial of home-based computerized working memory training for children with sickle cell disease

The American Society of Pediatric Hematology/Oncology Conference

Objectives: To determine the effects of Cogmed, a home-based computerized Working Memory (WM) training intervention, in children with SCD using a randomized controlled trial design.   Results: Ninety-one participants (M age=10.43, SD=2.93; 59% female; 69% HbSS) enrolled in the study; 52% (...

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Acute Vaso-Occlusive Episode in Sickle Cell Anemia

Family Practice Notebook

Acute Vaso-Occlusive Episode in Sickle Cell Anemia: II. Epidemiology Affects almost all Sickle Cell Anemia patients May occur as early as age 6 months III. Pathophysiology Deoxygenated Hemoglobin polymerizes in triple helix chains Results in Red Blood Cells assuming sickled shape Results in Occlusion of small vessels and capillaries IV. Precipitating Factors A. Preceded by infect...

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action

National Academies of Sciences, Engineering, and Medicine

This consensus study report was commissioned by the Office of Minority Health at the Office of the Assistant Secretary for Health at the U.S. Department of Health and Human Services to provide a comprehensive approach to the management and potential interventions for sickle cell disease (SCD), a genetic condition affecting approximately 100,000 people in the United States and millions worldwide. The report sets forth a substantial agenda begin...

Benign Hematologic Disorders in Children, an Issue of Pediatric Clinics of North America, Volume 65-3

The Clinics: Internal Medicine

This issue will provide a current update on diagnosis, treatment, and management of children with benign hematological disorders. Dr. Callaghan has put together a comprehensive issue with clinical reviews written by top experts in the field. Articles are devoted to the following topics: Hemophilia; Sickle cell acute chest; Sickle cell drugs; Sickle cell gene therapy; Sickle cell menses and pain; Pediatric DVT; Atypical HUS; von Willebrand Dise...

Cerebrovascular Accident in Sickle Cell Anemia

Family Practice Notebook

Cerebrovascular Accident in Sickle Cell Anemia: II. Epidemiology: Prevalence Children: 5% Highest risk at ages 2 to 5 years old with Sickle Cell Anemia A. Silent cerebral infarct occurs in up to 25% of children by age 6 years old B. Young adult (age <20): 11% C. Age 45 years old: 24% D. Lifetime risk: 25% III. Pathophysiology A. Silent Cerebral Infarction 1. Silent CVA...

COVID-19 Community Survey Report – NORD Rare Insights

National Organization for Rare Disorders

The novel coronavirus, and the disease that it causes, COVID-19, is causing significant challenges for millions of Americans living with rare diseases. People with underlying conditions are at risk of more severe illness from COVID-19, and rare disease patients, their caregivers and family members are seeing their lives disrupted in numerous other ways. The National Organization for Rare Disorders conducted a community survey in early...

COVID-19: Highest Risk Patients are Asked to Stay at Home for 12 Weeks [England]


A million and a half people in England who are at very high risk of severe illness and admission to hospital because of COVID-19 will receive a letter this week asking them to stay at home for at least 12 weeks. Other people in the household will not have to remain inside but should adhere to Public Health England’s advice to leave a distance of at least 2 m when interacting with other people. People falling into this extreme...

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