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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...

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. Possibl...

7 Ways to Step Up Your Sleep Game

Black Health Matters

We can’t get out of bed in the morning and it’s no surprise why. According to the National Sleep Foundation, 60 percent of us wake up feeling out of sorts and sluggish at least a few times each week. Are you among the groggy and grumpy when the alarm goes off each morning? Try these seven tricks to step up your sleep game and make climbing out of bed easier: Start the Night Before Drink chamomile tea...

8 Tips to Support Students With Sickle Cell Disease

Black Health Matters

In the United States, sickle cell disease is most commonly found among African Americans or persons of African descent; however, people of all races and ethnicities can have SCD. About 1 in every 365 African-American babies in the U.S. is born with SCD; and worldwide, approximately 300,000 babies are born with SCD each year. As more people move from areas highly affected by SCD to the U.S., schools will become more diverse and there is...

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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:...

95% of women in England not screened for sickle cell anaemia or thalassaemia by 10 week target

British Medical Journal

Most women fail to receive antenatal screening for sickle cell anaemia or thalassaemia within the recommended time of 10 weeks, a study of general practice in England has found (British Journal of General Practice 2008;58:154-9). This indicates that screening may often occur too late to allow couples a choice regarding termination of affected fetuses. The study assessed antenatal screening for the two inherited disorders in all pregnancies rep...

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 family-based randomized controlled trial of pain intervention for adolescents with sickle cell disease

Journal of Pediatric Hematology/Oncology

The study had 2 aims—to determine the efficacy of a family-based cognitive-behavioral pain management intervention for adolescents with sickle cell disease (SCD) in (1) reducing pain and improving health-related variables and (2) improving psychosocial outcomes. Each adolescent and a family support person were randomly assigned to receive a brief pain intervention (PAIN) (n=27) or a disease education attention control intervention (DISEASE ED)...

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ACSM and CHAMP summit on sickle cell trait: mitigating risks for warfighters and athletes

Medicine & Science in Sports & Exercise

INTRODUCTION: An estimated 300 million people worldwide have sickle cell trait (SCT). Although largely benign, SCT has been associated with exertional rhabdomyolysis and exercise-related sudden death in warfighters/athletes (WA). The National Collegiate Athletic Association’s policy to confirm a student athlete’s SCT status during their preparticipation medical examination prompted reaction from some organizations regarding the rationale and eth...

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...

An official American Thoracic Society clinical practice guideline: diagnosis, risk stratification, and management of pulmonary hypertension of sickle cell disease

American Journal of Respiratory and Critical Care Medicine

BACKGROUND: In adults with sickle cell disease (SCD), an increased tricuspid regurgitant velocity (TRV) measured by Doppler echocardiography, an increased serum N-terminal pro-brain natriuretic peptide (NT-pro-BNP) level, and pulmonary hypertension (PH) diagnosed by right heart catheterization (RHC) are independent risk factors for mortality.   METHODS: A multidisciplinary committee wa...

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...

Blood transfusion in the management of sickle cell disease: Evidence-based management of sickle cell disease

National Heart, Lung, and Blood Institute (U.S.)

Note from the National Guideline Clearinghouse: This guideline references a drug(s) for which important revised regulatory and/or warning information has been released. December 14, 2016 – General anesthetic and sedation drugs External Web Site Policy: The U.S. Food and Drug Administration (FDA) is warning that repeated or lengthy use of general anesthetic and sedation drugs during surgeries or procedures in children younger than 3 years or...

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...

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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 Randomized Controlled Trial of Intravenous Magnesium for Sickle Cell Pain Crisis in Children


Introduction: There are approximately 18,000 hospitalizations and 75,000 hospitalization days annually in the United States for children experiencing sickle cell vasoocclusive crises. Despite advances in the management of other comorbidities of sickle cell disease, little has changed in the management of sickle cell pain crises. Magnesium, a known vasodilator, anti-inflammatory and pain reliever, has the potential to alter the pathophysiology...

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...

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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 infection 25% of the time 1. Human Parvovirus B19 is a common viral caus...

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

National Academies of Sciences, Engineering, and Medicine

The Department of Health and Human Services (HHS), Office of Minority Health requests that the National Academies of Sciences, Engineering, and Medicine convene an ad hoc committee to develop a strategic plan and blueprint for addressing sickle cell disease (SCD) in the United States. In conducting its work, the committee will examine:The epidemiology, health outcomes, genetic implications, and societal factors associated with...

Athlete and Coach Knowledge, Attitudes, and Perceptions of Sickle Cell Trait and National Collegiate Athletic Association Mandated Testing: Recommendations for Intervention

Georgia Southern University

Author’s abstract: Individuals with Sickle Cell Trait have died suddenly after extreme exertion during military training, athletic practice or games (Kerle & Nishimura, 1996; Harrelson, Fincher & Robinson, 1995; Howe & Bowden, 2007). One of those deaths, Dale Lloyd, a football player at Rice University, prompted a change in the National Collegiate Athletic Association’s (NCAA) Sports Medicine Handbook Guideline 3c: The Student Athlete...

Biochemical and Clinical Aspects of Hemoglobin Abnormalities


Biochemical and Clinical Aspects of Hemoglobin Abnormalities contains the proceedings of a symposium held on the Pingree Park campus of Colorado State University on October 2-7, 1977. Contributors discuss the biochemical and clinical aspects of hemoglobin abnormalities and cover topics ranging from amino acid substitutions to sickle cell disease, glycosylated hemoglobins, cystamine inhibition of sickling, and gelation of sickle cell hemoglobin. T...

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 may occur in up to 25% of children with Sickle Cell Anemia by age 6 years...

Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease: A Biopsychosocial Approach

Oxford University Press, USA

Over recent decades, tremendous advances in the prevention, medical treatment, and quality of life issues in children and adolescents surviving cancer have spawned a host of research on pediatric psychosocial oncology. This important volume fulfills the clear need for an up-to-date, comprehensive handbook for practitioners that delineates the most recent research in the field–the first of its kind in over a decade. Over 60 renowned authors have...

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