Accommodation and Compliance Series: Employees with Sickle Cell Anemia

JAN's Accommodation and Compliance Series is designed to help employers determine effective accommodations and comply with Title I of the Americans with Disabilities Act (ADA). Each publication in the series addresses a specific medical condition and provides information about the condition, ADA information, accommodation ideas, and resources for additional information.  The Accommodation and Compliance Series is a starting point in the accommodation process and may not address every situation. Accommodations should be made on a case-by-case basis, considering each employee’s individual limitations and accommodation needs. Employers are encouraged to contact JAN to discuss specific situations in more detail.   Abstract source
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Sickle Cell School Outreach

The Sickle Cell Center at Children’s Hospital of Philadelphia has developed comprehensive information on sickle cell disease and how it can affect the school life of children. The information is available to teachers, school nurses, athletic departments, camps, and before- and aftercare providers. Typically, families request that this information be sent to their child's teacher or teachers and passed along to school nurses. Families may request that a member of the Center meet with school personnel to provide information about measures that can be taken to avoid or address problems that students with sickle cell disease may face. To learn more about the program and/or to request specially developed literature for school staff, contact our Center at 215-590-3423.   Abstract source
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New York Jets Running Back Tevin Coleman: Sickle-Cell Trait Threatened My Career. Now, I'm Raising A Daughter With Sickle-Cell Disease

New York Jets running back Tevin Coleman didn't know that he carried sickle-cell disease until he was in college. That's when the rigorous training required for his professional football career brought his medical condition to the forefront.  Carriers to sickle-cell disease have what's called sickle-cell trait, which occurs when a person inherits one sickle-cell disease gene and one healthy gene.  In most cases, people with the trait don't notice symptoms, but athletes with the trait like Coleman may have an increased risk for heatstroke and muscle breakdown after intense exercise, according to the CDC. Coleman needed to emphasize hydration and rest to continue his career.   Related story
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Real-World Effectiveness of Voxelotor for Treating Sickle Cell Disease in The US: A Large Claims Data Analysis

Sickle cell disease (SCD) is a genetic disease that impacts patients’ quality of life, healthcare costs, and life expectancy. Elevated sickle hemoglobin (HbS), which readily polymerizes, causes red blood cell sickling, leading to chronic hemolytic anemia and complications often requiring hospitalization and transfusions. In 2019, voxelotor, which inhibits HbS polymerization, was approved for SCD treatment. Sickle cell disease (SCD) is a systemic, inherited disorder affecting approximately 100,000 people in the United States. It predominantly occurs in ethnic groups of African, Middle Eastern, South Mediterranean, and Indian descent. Mutations in the gene encoding hemoglobin (Hb) subunit β lead to sickle Hb (HbS), which then polymerizes under deoxygenated conditions and thereby disturbs red blood cell (RBC) shape. The consequences include the chronic destruction of RBCs, anemia, and limited oxygen delivery. This, in turn, can affect the function of various organs and increase the risk of morbidity, including disease progression and end-organ damage that can substantially impact the quality of life. Although mortality in children has decreased over time, mortality rates in adults have remained high over the past few decades. Characteristic effects of SCD are chronic anemia, hemolysis, and painful vaso-occlusive crises (VOCs). VOCs cause reoccurring episodes of severe pain and are often the main reason for patient hospitalizations   Abstract source
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Genes for Teens with Sickle Cell Disease

What are genes? • Genes determine specific traits that are passed down to you, or inherited, from your parents. These traits are things like eye color, hair color, skin tone, physical features, and the type of hemoglobin in your blood. • Genes are pieces of DNA that help make you who you are. • You inherit one set of genes from your mother and one set of genes from your father. What is sickle cell disease? • Sickle cell disease affects part of the red blood cells, called hemoglobin. • Hemoglobin helps carry oxygen from the lungs to the rest of the body. How are genes related to sickle cell disease? • Everyone has 2 hemoglobin genes. One gene is passed down from the mother and one is from the father. • People with sickle cell disease inherit a hemoglobin S gene from one parent and another abnormal hemoglobin gene from the other parent.   Abstract source
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Taking Control: Teens with Sickle Cell Disease

Sickle cell disease is a blood disorder that affects red blood cells (RBC). The main purpose of red blood cells is to deliver oxygen to the body. Blood delivers oxygen to all of the tissues in the body. The part of the blood that carries oxygen is called hemoglobin. Sickle cell disease is a blood disorder that affects the hemoglobin (HEE-muh-glow- bin) within the red blood cells. The main role of hemoglobin is to deliver oxygen to the cells of the body. People with sickle cell disease have red blood cells that contain mostly hemoglobin S, an abnormal type of hemoglobin. Sometimes these red blood cells become sickle (banana) shaped, and have trouble passing through small blood vessels. Taking Control: Teens with Sickle Cell Disease offers many details that are crucial to your health. For this reason, it is best to read only one unit of the booklet at a time.    Abstract source
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Fact Sheet: Hemoglobin C Trait

What is the hemoglobin C trait?  • Hemoglobin C trait is a condition that affects the red blood cells.  • Your red blood cells contain hemoglobin, which carries oxygen from the lungs to all parts of your body. People with normal hemoglobin have only one (1) type, hemoglobin A.  • People with hemoglobin C trait have hemoglobin A and hemoglobin C in their red blood cells. Hemoglobin C is not normal.  Who can have the hemoglobin C trait?  About one out of every 40 African-Americans has hemoglobin C trait. This trait affects mostly African-Americans and people who have African ancestors. It is possible for a person of any nationality to have a hemoglobin C trait.   Abstract source
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Fact Sheet: Hemoglobin E Trait

What is the hemoglobin E trait?  • Hemoglobin E trait is a condition that affects the red blood cells.  • Your red blood cells contain hemoglobin, which carries oxygen from the lungs to all parts of your body. People with normal hemoglobin have only one (1) type, hemoglobin A.  • People with hemoglobin E trait have hemoglobin A and hemoglobin E in their red blood cells. Hemoglobin E is not normal.  • People with hemoglobin E trait usually do not have enough hemoglobin.  Who can have the hemoglobin E trait? Hemoglobin E trait is very common in people whose ancestors came from Asia. It can also be found in people whose ancestors came from Africa, India, the Middle East, or the Mediterranean region. It is possible for a person of any nationality to have a hemoglobin E trait.   Abstract source
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Educator’s Guide to Sickle Cell Disease

Sickle cell disease is an inherited blood disorder affecting about one out of every 375 African Americans. Most children with sickle cell disease fall within the normal intelligence range and should be encouraged to reach their full potential. Advances in medical treatment have dramatically increased the lifespan of people with sickle cell disease. For this reason, it is even more important that children with sickle cell disease receive the full benefit of a primary, secondary, and college education. The goal of this booklet is to help educators understand sickle cell disease, its complications (health problems), and its treatment. This publication will help educators assist children who have this condition to achieve their educational goals.   Abstract source
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Facts About Sickle Cell Disease

Sickle Cell Disease Goes Beyond Red Blood Cells and, Early on, Progresses to a Chronic Vascular Disease Vaso-Occlusive Crises May Account for a Majority of the Burden of Sickle Cell Disease • Sickle cell disease (SCD) is a genetic blood disorder arising from mutations in the hemoglobin gene • Multicellular adhesion among endothelium and blood cells is a major driver of vaso-occlusion and vaso-occlusive crises (VOCs) • The upregulation and expression of specific adhesion mediators, including selectins, drive multicellular adhesion clusters • VOCs are the clinical hallmark of SCD and originate from ongoing, silent, vaso-occlusion   Abstract source
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