GSCDN organization brings together the leading SCD researchers and clinicians from high-, middle-, and low-income countries to form the Global Sickle Cell Disease Network (GSCDN). The GSCDN works to: - develop research studies that will help clarify the scope of the problem of SCD around the world - determine the most effective, efficient ways to treat SCD, especially in low-income settings - implement solutions that fit the communities they serve - establish clinical care and research coordinating centers within Africa through which the work described above can take place. These centers will facilitate local and regional training, infrastructure development, needs assessments and priority setting. The GSCDN is a wonderful example of researchers and clinicians from around the world working together to bring about real change that will not only have a positive impact on children born with SCD, but on whole communities and regions. Official website

VCU Massey Cancer Center is among the top 4 percent of cancer centers in the country and is one of two in the state designated by the National Cancer Institute to lead and shape America’s cancer research efforts. Massey conducts cancer research at every level, including basic science (laboratory), translational, clinical and population sciences research. Massey is nationally recognized for its work in cancer disparities, studying the socioeconomic and cultural forces causing or contributing to disparities in cancer outcomes with a focus on minorities and the medically indigent. Its mission is to serve as a comprehensive center of excellence in cancer research, prevention and control, patient care and education. Its guiding principles are to make important discoveries about cancer and to translate these discoveries rapidly into better prevention, detection, treatment and control of cancer to enhance the quality of life of all individuals affected by cancer. Official website

The University of Pittsburgh School of Medicine educates physicians who are science-based, skilled, and compassionate clinicians prepared to meet the challenges of practicing medicine in the 21st century, and educate investigators who are prepared to conduct cutting-edge biomedical research focused on bettering the human condition and advancing the fundamental understanding of medical science. The mission of the University of Pittsburgh School of Medicine is to improve the health and well-being of individuals and populations through cutting-edge biomedical research, innovative educational programs in medicine and biomedical science, and leadership in academic medicine. It strives to implement this mission with the highest professional and ethical standards, in a culture of diversity and inclusiveness, and in an environment that enables each individual to develop to his or her fullest potential. Official website

Sickle Cell Disease Association of North Texas (SCDANT) is committed to providing meaningful support for persons living with sickle cell conditions, as well as promoting awareness in the community. The vision of SCDANT is to promote finding a universal cure for Sickle Cell Disease while improving the quality of life for individuals and families where sickle cell related conditions exist. The mission of SCDANT is to increase knowledge relating to sickle cell disorders and improve the lives of children and families through implementation of programs and services. Official website

Maidunama Sickle Cell Foundation is principally engaged in advocacy and providing succor to children suffering from SCD. The Foundation also offers free genotype testing to sensitize people and free medicines distribution, including anti–malarials. Other activities carried out by the Foundation include: Avocacy: MAISCEF carries out different sensitization and advocacy program to create awareness on SCD. Hospital Visits: MAISCEF undertakes out hospital visits to assist indigent in-patients to settle treatment costs as well as provide counseling services. Workshops/Seminars: This activity is carried out especially to train and educate local health workers. Free Genotype Testing: Occasionally MAISCEF offers free genotype testing for the general public, in order to enable them know their genotype and help prevent the disease. Read more about other activities performed by the Foundation.   Official website

This is a parents handbook for sickle cell disease from The Virginia Sickle Cell Awareness Program. It contains: -Parent Handbook Part I -Parent Handbook Part II Part I is relevant for parents with kids from birth to six years of age, and Part II is relevant for parents with kids of age six to eighteen years. This handbook was developed in response to requests from parents of children with sickle disease for more detailed information that they could refer back to as needed. The parents' role in early identification of infection and other problems is difficult yet so critical to the health of their child particularly during the first few years of life. Abstract source

Sickle cell trait is the inheritance of one gene for sickle hemoglobin and one for normal hemoglobin. During intense or extensive exertion, the sickle hemoglobin can change the shape of red cells from round to quarter-moon, or “sickle.” This change, exertional sickling, can pose a grave risk for some athletes. In the past seven years, exertional sickling has killed nine athletes, ages 12 through 19. Research shows how and why sickle red cells can accumulate in the bloodstream during intense exercise. Sickle cells can “logjam” blood vessels and lead to collapse from ischemic rhabdomyolysis, the rapid breakdown of muscles starved of blood. Major metabolic problems from explosive rhabdomyolysis can threaten life. Sickling can begin in 2-3 minutes of any all-out exertion – and can reach grave levels soon thereafter if the athlete continues to struggle. Heat, dehydration, altitude, and asthma can increase the risk for and worsen sickling, even when exercise is not all-out. Despite telltale features, collapse from exertional sickling in athletes is under-recognized and often misdiagnosed. Sickling collapse is a medical emergency. Abstract source

Sickle cell disease changes the shape and texture of hemoglobin, which is a protein in red blood cells. People with sickle cell disease have hemoglobin that makes red blood cells a different shape. The banana-shape of sickle cells block blood flow, which can cause: - Pain - Damage to organs, muscles, and tissues - Sticky blood and damage to blood vessels due to: Too many platelets (cells that help us stop bleeding when we get hurt), Too many white blood cells (cells that protect us against infections). Hydroxyurea (HU) is a medicine that treats sickle cell disease. It can’t cure you of sickle cell disease, but it can help you feel better if you take it every day and can help you stay healthy as you grow older. Research shows people who take Hydroxyurea: - Live longer and have less pain - Need fewer blood transfusions and hospital stays - Have fewer cases of acute chest syndrome - Have less damage to their brain, lungs, kidneys, and spleen Abstract source

The purpose of this booklet is to describe sickle cell disease (SCD) and identify roles for teachers, other school staff and parents/caregivers to support students living with SCD. We identify ways SCD may impact a student’s daily life and describe how school staff can make accommodations (i.e., adjustments to the classroom setting or instruction) to meet the needs of children who may experience health problems associated with SCD during the school day. The content covers information on ways SCD might impact education outcomes and information about pain, stroke, and symptoms associated with SCD that school personnel should know. Each student’s experience with SCD is different and the tips discussed should not replace any medical advice a person with SCD receives from their doctor.   Abstract source

Given the prevalence of sickle cell disease among black Americans, vexing questions of race and stigma have shadowed the history of its medical treatment. Recent developments in treating pain crises and gene therapy are part of a complex history of slow progress tinged with constant peril. A century ago, people with sickle cell disease were clinically invisible. Even after James Herrick identified the “peculiar elongated and sickle-shaped red blood cells” associated with the disorder in 1910, it was often and easily misdiagnosed. Vulnerable to infectious diseases in a time when infant mortality ran high, most children would have been diagnosed not with sickle cell disease but with whatever infectious disease was currently prevalent. When Johns Hopkins–trained pathologist Lemuel Diggs began focusing on the disease in the 1920s, the malady was still rarely diagnosed. It was easy to misinterpret the recurrent fever, frequent infections, enlarged spleen, and excruciatingly painful episodes as indications of a bout of malaria, which was endemic in the Memphis region where Diggs worked. Abstract source