Sickle Cell Disease
Take the first step in faith. You don’t have to see the whole staircase, just take the first step – Martin Luther King, Jr
image by: Sickle Cell 101
A World Without Sickle Cell, I don’t think that is truly understood what it means.
It means to live a life pain free with no more pain meds and medication taken daily, it means not worrying about receiving the proper healthcare or being accused of being an abuser.
It means no more missed days of school and work, missed field trips, missed birthdays, vacations holidays and special events, music recitals birthday parties and slumber parties.
It means not watching from the sidelines while your friends and family are enjoying all these times, while your friends are running and playing and just being kids while you are wishing you could be too but instead your body…
A mother of 3 warriors was moved to share a powerful poem she wrote titled “A World without Sickle Cell’ after reading a moving article on our website. She expressed how so many people just don’t understand what SCD is nor do they understand what it does to a person physically and emotionally, and not only to the warriors living with it but the ones who care for them and love them.
Sickle Cell Anemia News is a digital platform providing daily updates on research, science and advice news for Sickle Cell patients and caregivers.
Sickle Cell Warriors, Inc. is a non-profit charitable organization dedicated to education, empowerment, and awareness about sickle cell disease. Our mission is to inspire those affected by sickle cell. As of this minute, you are no longer alone. You have us—and we have you.
Mission: To provide education and life-enhancing programs and services to individuals with sickle cell disease, to broaden public awareness about sickle cell disease and to promote medical research and education to ultimately find a cure.
We exist to provide help & support for people affected by sickle cell disorders and their carers.
SCTPN is dedicated to improving the quality of life for individuals and families living with sickle cell disease, thalassemia and other hemoglobin disorders through education, advocacy and support interactions.
While there is a lot of information published on Sickle Cell Disease, there is comparatively less on the person with this hereditary affliction. This web site aims to correct the anomaly and be as complete a resource to the Sickle Cell Disease Patient as possible.
Sickle cell facts and research: understandable and relevant.
Our Mission: To support sickle cell awareness, education, state-of-the-art treatment and research, and to bring hope to families affected by this devastating disease
The American Sickle Cell Anemia Association (ASCAA) is a 501(c) 3 organization that provides quality and comprehensive services through diagnostic testing, evaluation, counseling and supportive services to individuals and families at risk for Sickle Cell Disease and it's variants.
The daily trials and tribulations of living with sickle cell.
Sickle cell anemia is an inherited, lifelong disease. People who have the disease are born with it. They inherit two genes for sickle hemoglobin—one from each parent. People who inherit a sickle hemoglobin gene from one parent and a normal gene from the other parent have a condition called sickle cell trait. Sickle cell trait is different than sickle cell anemia. People who have sickle cell trait don't have the disease
"To advocate for and enhance our membership's ability to improve the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions, while promoting the search for a cure for all people in the world with sickle cell disease."
Here, my words will give voice to the day-to-day sufferings of one living with Sickle Cell Anemia. Hear ME!
There are no standard treatments that cure sickle cell anemia. However, there are treatments that help people manage and live with the disease. Treatment relieves pain, prevents infections, minimizes organ damage, and controls complications and can include medications, such as pain relievers and hydroxyurea (Hydrea), at times blood transfusions, and other options as needed.
Despite recent progress in reducing death among young children with Sickle Cell Disease (SCD), some children with sickle cell anemia continue to die of health problems related to SCD. To fully realize the promise of newborn screening (NBS) in saving lives of children affected by SCD, health strategies must increase the following: promotion of proven therapies; comprehensive regular screening for disease-related health problems; and education of parents of children with SCD.
One of the best resource sites for sickle cell disease.
The risk of inheriting sickle cell anemia comes down to genetics. For a baby to be born with sickle cell anemia, both parents must carry a sickle cell gene. The gene is more common in families that come from Africa, India, Mediterranean countries, Saudi Arabia, the Caribbean islands, and South and Central America. In the United States, it most commonly affects blacks.
Sickle cell anemia is caused by an error in a gene that makes the beta globin chain of hemoglobin. The resultant abnormal hemoglobin (sickle hemoglobin) deforms the red blood cells when they are under low oxygen conditions.
Doctors diagnose sickle cell through a blood test that checks for hemoglobin S - the defective form of hemoglobin. To confirm the diagnosis, a sample of blood is examined under a microscope to check for large numbers of sickled red blood cells - the hallmark trait of the disease.
If you only inherit the gene from one parent, you have what's known as the sickle cell trait. It's likely that your blood will contain some sickle cells, but you'll be able to produce normal haemoglobin and won't usually experience symptoms. However, you'll be a carrier of sickle cell anaemia and may pass the abnormal gene on to your children.
Certain conditions can trigger sickling, such as cold, infection, lack of fluid in the body (dehydration) or low oxygen. Good treatment, started early in life, can prevent complications. So, early diagnosis and specialist treatment are advised for SCD.
Emory University runs this website which provides news and information to people with sickle cell as well as to professionals.
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