There are several support organizations devoted to helping people and families who have sickle cell anemia and related sickle cell diseases. The two largest such organizations in the U.S. are The American Sickle Cell Anemia Association and the Sickle Cell Disease Association of America.
- Cure 4 The Kids Foundation.
- Sickle Cell Association of Houston.
- Sickle Cell Association of Texas Marc Thomas Foundation.
- Sickle Cell Task Force.
Who is more likely to get sickle cell anemia?
Who is most likely to develop sickle cell anemia? Sickle cell disease is more common in certain ethnic groups, including: People of African descent, including African-Americans (among whom 1 in 12 carries a sickle cell gene) Hispanic-Americans from Central and South America. People of Middle Eastern, Asian, Indian, and Mediterranean descent.
What are people most likely to develop sickle cell anemia?
What are people most likely to develop sickle cell anemia? Sickle cell disease is more common in certain ethnic groups, including: People of African descent , including African-Americans (among whom 1 in 12 carries a sickle cell gene) Hispanic-Americans from Central and South America. People of Middle Eastern, Asian, Indian, and Mediterranean ...
Who are some famous people with sickle cell anemia?
Sickle cell disease is more common in certain ethnic groups, including:
- People of African descent, including African-Americans (among whom 1 in 12 carries a sickle cell gene)
- Hispanic-Americans from Central and South America.
- People of Middle Eastern, Asian, Indian, and Mediterranean descent.
What is the best diet for sickle cell anemia?
When following a diet plan for anemia, remember these guidelines:
- Don’t eat iron-rich foods with foods or beverages that block iron absorption. ...
- Eat iron-rich foods with vitamin C-rich foods, such as oranges, tomatoes, or strawberries, to improve absorption.
- Eat iron-rich foods with foods that contain beta carotene, such as apricots, red peppers, and beets, to improve absorption.
What are some organizations that help with sickle cell anemia?
United StatesAmerican Sickle Cell Anemia Association. P.O. Box 1971. ... The Sickle Cell Disease Association of America. ... The American Society of Hematology. ... The Alliance of Genetic Support Groups. ... National Heart, Lung, and Blood Institute (NHLB) ... Raremark—Sickle Cell useful resources. ... St. ... The American Pain Society.More items...
What research is being done to cure sickle cell anemia?
New research from University of Alabama at Birmingham, published in the New England Journal of Medicine, suggests a gene therapy called LentiGlobin could provide a permanent cure for sickle cell disease.
Is there any research being done on sickle cell?
The NHLBI has researched sickle cell disease since its founding as the National Heart Institute in 1948. Since 1972, when the National Sickle Cell Anemia Control act was passed, the NHLBI has spent more than $1 billion researching the condition.
Is there a new treatment for sickle cell?
EMA has recommended granting a marketing authorisation in the EU for Oxbryta (voxelotor) for the treatment of haemolytic anaemia (excessive breakdown of red blood cells) due to sickle cell disease in patients 12 years of age and older.
What is SCDAA for parents?
The SCDAA publishes and distributes to parents and teachers educational materials for living and coping with sickle cell disease. Through its member organizations, SCDAA provides such services as screening and referrals, counseling, home nursing care, research updates, psychosocial services, transportation, summer camp, ...
What is the purpose of the sickle cell association?
The goal of the Sickle Cell Disease Association of America (SCDAA) is “to find a cure and improve the quality of life for those who are afflicted and their families.”. The SCDAA publishes and distributes to parents and teachers educational materials for living and coping with sickle cell disease.
What is the NHLB?
The NHLB is a part of the federal government’s National Institutes of Health, focused on research, training, and education programs to promote the prevention and treatment of heart, lung, and blood diseases.
Is there a community for sickle cell?
Community. Living with sickle cell can be challenging, but it’s important to remember that you’re not alone. Beyond your loved ones and care team, there is an entire sickle cell community, including advocacy organizations, who are here to help. These organizations can provide you or your loved ones with ongoing support and resources.
Is sickle cell a challenge?
Living with sickle cell can be challenging, but it’s important to remember that you’re not alone. Beyond your loved ones and care team, there is an entire sickle cell community, including advocacy organizations, who are here to help. These organizations can provide you or your loved ones with ongoing support and resources.
What is the mission of ASCAA?
ASCAA is a comprehensive health organization whose mission is to connect with families, inspire hope, and improve their quality of life. We are ultimately working to create a world without sickle cell disease.
What is newborn screening?
Newborn Screening provides early detection of infants with genetic and metabolic disorders. Most states in this country provide newborn screening for inherited disorders such ad PKU, Sickle Cell Disease and Galactosemia. In some states there may be as many as twenty-five (25) metabolic disorders screened for in a newborn at birth.
Is sickle cell anemia a substitute for professional advice?
All information is merely for educational and informational purposes for sickle cell anemia. It is not intended as a substitute for professional advice, please seek an appropriately qualified and licensed physician for medical advice. Should you decide to act upon any information given, you do so at your own risk.
Why is sickle cell anemia important?
They're even more important for children with sickle cell anemia because their infections can be severe. Your child's doctor will ensure that your child receives all of the recommended childhood vaccinations, as well vaccines against pneumonia and meningitis and an annual flu shot.
How to prevent sickle cell?
Drink plenty of water. Dehydration can increase your risk of a sickle cell crisis. Drink water throughout your day, aiming for about eight glasses a day. Increase the amount of water you drink if you exercise or spend time in a hot, dry climate. Avoid temperature extremes.
How to diagnose sickle cell anemia?
Sickle cell anemia is usually diagnosed through genetic screening done when a baby is born. Those test results will likely be given to your family doctor or pediatrician. He or she will likely refer you to a doctor who specializes in blood disorders (hematologist) or a pediatric hematologist.
What is the procedure to replace sickle cell anemia?
Stem cell transplant. Also known as bone marrow transplant, this procedure involves replacing bone marrow affected by sickle cell anemia with healthy bone marrow from a donor. The procedure usually uses a matched donor, such as a sibling, who doesn't have sickle cell anemia.
How old do you have to be to take penicillin for sickle cell anemia?
Children with sickle cell anemia might receive penicillin between the ages of about 2 months old until at least age 5. Doing so helps prevent infections, such as pneumonia, which can be life-threatening to children with sickle cell anemia.
How to test for sickle cell disease?
Sickle cell disease can be diagnosed in an unborn baby by sampling some of the fluid surrounding the baby in the mother's womb (amniotic fluid). If you or your partner has sickle cell anemia or the sickle cell trait, ask your doctor about this screening.
What is L-glutamine powder?
L-glutamine oral powder (Endari). The FDA recently approved this drug for treatment of sickle cell anemia. It helps in reducing the frequency of pain crises.
Building stronger partnerships with SCD organizations
Beyond the patients’ healthcare team, there is an entire SCD community, including advocacy organizations, who can help patients with SCD. These organizations can provide patients with ongoing support and resources.
Informational Resources
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