Search

Author: calovel

Dispelling the Myth: The Important Truth about Sickle Cell Disease and the West Indian Culture

By Melissa Creary

I was three years old when I was diagnosed. My parents did not know what was wrong, when after a day at the pool, I became very ill and nothing seemed to pacify me. I went through test after test. At one point, the doctors even thought I had leukemia. It was not until my aunt, a nurse, asked my mother if I had ever been tested for sickle cell anemia, that my family finally had an answer…

Letters from Caucasian Families with Sickle Beta Thalassemia

Sickle Cell Disease can affect ANY race! My name is Vikki and my husband and I am a Caucasian couple with 2 beautiful boys that have from Sickle Beta Thalassemia Plus. I am of Italian decent and have a thalassemia trait. When I was pregnant I was tested and my doctor wanted to test my husband for it as well. I received a call several days later that he has a sickle trait…

Newborn Screening FAQ

By JoAnn Beasley, RN, BS

State of Georgia Sickle Cell Newborn Coordinator, Clinical Manager of Georgia Comprehensive Newborn Screening Program

Sickle Cell Disease Information for Parents

Usually, red blood cells (RBCs) are shaped like round discs. People who have sickle cell disease, though, have RBCs that are shaped like sickles, or crescent moons. This defect can cause painful episodes, serious infections, chronic anemia, and damage to body organs.

Read more at KidsHealth

What Is Sickle Cell Disease? Information for Teens

Sickle cell disease is a blood disorder that’s inherited — meaning it’s passed down from parents to their children. Babies are born with sickle cell disease when they inherit two abnormal genes (one from each parent). These genes cause the body’s red blood cells to change shape.

Read more at KidsHealth

Do You Know About Sickle Cell Anemia? Information for Kids

Have you ever seen a sickle? It’s a farm tool with a curved, sharp edge for cutting wheat. Sickle cell anemia (say: uh-NEE-mee-uh) is a disease of the blood. It gets its name because a person’s red blood cells are shaped like sickles, or crescent moons, instead of their usual round, disc shape.

Read more at KidsHealth

The National Newborn Screening & Global Resource Center

The National Newborn Screening and Global Resource Center (NNSGRC) serves as an independent U.S. national resource center for newborn screening and provides newborn screening information globally. It serves as the only non-federally funded comprehensive source of newborn screening information.

Read more

Sickle Cell Anemia Information Portal from the Mayo Clinic

Sickle cell anemia is an inherited form of anemia — a condition in which there aren’t enough healthy red blood cells to carry adequate oxygen throughout your body.

Normally, your red blood cells are flexible and round, moving easily through your blood vessels. In sickle cell anemia, the red blood cells become rigid and sticky and are shaped like sickles or crescent moons. These irregularly shaped cells can get stuck in small blood vessels, which can slow or block blood flow and oxygen to parts of the body.

Read more at the Mayo Clinic

Sickle Cell Anemia Information Portal on MedlinePlus

Sickle cell anemia is a disease in which your body produces abnormally shaped red blood cells. The cells are shaped like a crescent or sickle. They don’t last as long as normal, round red blood cells. This leads to anemia. The sickle cells also get stuck in blood vessels, blocking blood flow. This can cause pain and organ damage.

Read more at MedlinePlus

Treatment and Prevention

A thankful teenager, Keon Penn of Atlanta celebrates his 14th birthday after being declared “cured” from sickle cell disease. Two years ago Keon underwent the world’s first unrelated stem-cell transplant at Egelston Children’s Hospital in Atlanta on December 11, 1998.  Read more…

How Sickle Cell Protects Against Malaria

A new article is likely to help solve one of the long-standing mysteries of biomedicine. In a study that challenges currently held views, researchers unravel the molecular mechanism whereby sickle cell hemoglobin confers a survival advantage against malaria, the disease caused by Plasmodium infection. These findings open the way to new therapeutic interventions against malaria, a disease that continues to inflict tremendous medical, social and economic burdens to a large proportion of the human population.

Read more at Science Daily

Sickle Cell Information for Teachers, Students, and Employers

Sickle Cell Disease is an inherited chronic illness which results in anemia (low blood counts) episodes of pain and increased susceptibility to infections. Any complication, if severe or untreated can be life threatening. Immediate treatment at a hospital or sickle cell center is required under these circumstances. Classroom and workplace guides Sickle cell patients may […]

About the Americans with Disabilities Act

Too often in the past, people with sickle cell disease were denied jobs or fair treatment at work solely because they had sickle cell disease. Now, the Americans With Disabilities Act of 1990 puts the strong arm of the law on the side of fairness. It protects many people with sickle cell disease from job […]

Sickle Cell Disease in Three Acts

The first act in the story of sickle cell disease, one of the oldest known genetic diseases, is not a happy one. Aside from a very small number of young patients undergoing successful bone marrow or stem cell transplants, there is no curative treatment. Other drugs address the disease according to which symptoms present most urgently, or serve as short-term solutions for a long-term problem.

Read more here.

Pfizer Announces Enrollment of First Patient in Phase 3 Trial in Sickle Cell Disease

RESET Trial to Assess Effectiveness and Safety of Rivipansel (GMI-1070) in the Treatment of Vaso-Occlusive Crisis in Hospitalized Individuals with Sickle Cell Disease

Pfizer Inc. (NYSE:PFE) announced that the first patient has been enrolled in the RESET (Rivipansel: Evaluating Safety, Efficacy and Time to Discharge) study – a Phase 3 clinical trial assessing the efficacy and safety of rivipansel for the treatment of vaso-occlusive crisis in hospitalized individuals with sickle cell disease who are six years of age or older.

Read more here.

FDA Helps Tackle Sickle Cell Disease

Sickle cell disease (SCD) is the most common inherited blood disorder in the United States. It affects about 100,000 children and adults in the United States—and millions of people worldwide. New treatments are needed to prevent and treat its serious complications. That’s why the U.S. Food and Drug Administration is working with patients and stakeholders, including academics and those from the pharmaceutical industry, to help develop new treatments for SCD.

Read more here.

Drug Development: A Complicated Path

By Courtney Humphries
Nature 515, S4–S5 (13 November 2014)
Published online 12 November 2014

Only one drug is available to treat sickle-cell disease, but a wave of investment and industry attention is set to turn the tide.

Read more here.

Employees with Sickle Cell Disease

For employees who have the genetic, life-long blood condition of sickle cell disorder (SCD) there are certain issues employers or any policy should take account of and/or cater for. Read more here.

US Department of Labor – Genetic Information Non Discrimination Act of 2008 (GINA)

The Genetic Information Nondiscrimination Act of 2008 (GINA), 42 U.S.C. § 2000ff, a Federal anti-discrimination statute, took effect on November 21, 2009. The EEOC’s regulations implementing Title II of GINA, which prohibits discrimination in employment based on genetic information, became effective on January 10, 2011. See 29 C.F.R. Part 1635. This document does not cover every aspect of GINA, but instead seeks to provide an overview of the law so that managers and employees are generally informed about its significance in the workplace.

Read more here.