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
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…
Sickle Cell Crisis
Always consider the presence of all types of sickle cell crisis, regardless of the dominant presentation.
Does Sickle Cell Disease Expose Racism in American Healthcare?
Unlike other diseases, the mortality rate from sickle cell disease is on the rise. When you consider that the majority of these patients are African-American, perhaps we shouldn’t be surprised.
For people in sickle cell crisis, specialized infusion centers offer far better care than the ER, study finds
People with sickle cell disease who were experiencing acute pain crises received far better care at specialized infusion centers than emergency departments, with faster access to pain medication and lower rates of hospital admissions, researchers reported Monday.
How One Child’s Sickle Cell Mutation Helped Protect the World From Malaria
Thousands of years ago, a special child was born in the Sahara. At the time, this was not a desert; it was a green belt of savannas, woodlands, lakes and rivers. Bands of hunter-gatherers thrived there, catching fish and spearing hippos. A genetic mutation had altered the child’s hemoglobin, the molecule in red blood cells that ferries oxygen through the body. It was not harmful; there are two copies of every gene, and the child’s other hemoglobin gene was normal. The child survived, had a family and passed down the mutation to future generations.
Living with a life-threatening sickle cell blood disorder
Yeah, I myself always thought that it affects just black people, especially Africans, but I got to find out that there are cases of sickle cell disorder in other regions and races as well - like Asians, South Americans, Caribbean and also Caucasians. However there are high numbers of sickle cell traits in African people, especially in Nigeria. I feel that with the magnitude of this disorder more should be done globally to create awareness.
Sickle Cell Anemia Is On The Rise Worldwide
Sickle cell anemia may not be as well-known as, say, malaria, tuberculosis or AIDS. But every year, hundreds of thousands of babies around the world are born with this inherited blood disorder. And the numbers are expected to climb.
Sickle cell disease: The forgotten survivors
Saved by screening as children, adults with the blood disorder SCD are left to fend for themselves.
Sickle-Cell Anemia Mystery Is Solved
Researchers discover how carriers of the sickle-cell anaemia gene are protected from malaria.
Debunking the myths around sickle cell disease
As with any disease, low awareness can spur myths and misperceptions and make it more difficult for those affected to obtain the care and support they need. Throughout my career, I’ve been asked a number of questions about SCD, many of which are common myths. In this article, I will share some of the more common myths, in an effort to separate the facts from fiction.
Easing the Pain of Sickle Cell Disease
They often turn up in the emergency room in severe pain, pleading for relief. A drug that can help reduce their flare-ups is readily available — yet too rarely used.
Easing the Toll of Sickle Cell Disease in Childbirth
Creating hospital teams devoted to treating pregnant women who have sickle cell disease reduced death rates for those women by almost 90 percent, a study at a major hospital in Ghana showed. Sickle cell disease is common in West Africa, and among black people in the Americas whose ancestors came from West Africa. It is caused by a genetic mutation that if inherited from only one parent protects against malaria, but if inherited from both parents can be lethal.
First Person: My Life With Sickle Cell Disease
Most college students’ biggest worry is their upcoming test or weekend plans. For Washington State University student Laelah Ndifon, it’s how quickly she can get to the nearest hospital.
Genetic Treatments for Sickle Cell
The only known cure for sickle-cell disease is bone marrow transplantation, which, in effect, provides a new circulatory system. But transplantation is expensive and requires a level of medical expertise that is unavailable in all but the wealthiest countries.
Here to Stay — Living With Sickle Cell Disease
Sickle cell anemia disease is a grasping chronic sickness that doesn’t let go. Unfortunately I have it and have had it since I was born. I don’t know life without sickle cell disease and therefore I don’t know life without pain — the daily aches, the crucial crises that come out of nowhere. Sickle cell is never predictable. Of course this disease has impacted my life beyond words. I’ve learned to cope with it.
Management of Sickle Cell Disease
Summary of the 2014 evidence-based report by expert panel members.
The Big News For Sickle Cell Anemia Is Not Gene Therapy
“Based on the data presented, hematologists should be discussing stem cell transplantation with patients who are symptomatic,” Thompson said. “Stem cell transplantation using cells from a sibling donor can be curative," she stated.
What Is It Like to Visit the ER With a Pain Crisis?
“It sucks. You never know if you will have a good experience or if you have to fight to get the care you need.” – Survey respondent living with SCD.
A World Without Sickle Cell
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 Disease News
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
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.
Sickle Cell Disease Foundation
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.
Sickle Cell Society
We exist to provide help & support for people affected by sickle cell disorders and their carers.
Sickle Cell Thalassemia Patients Network
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.
William E. Proudford Sickle Cell Fund
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
American Sickle Cell Anemia Association
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.
My Life Living With Sickle Cell
The daily trials and tribulations of living with sickle cell.
National Heart, Lung, and Blood Institute
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
Sickle Cell Disease Association of America
"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."
The Unveiling of Sickle Cell Anemia~A Life's Story
Here, my words will give voice to the day-to-day sufferings of one living with Sickle Cell Anemia. Hear ME!
American Society of Hematology
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.
National Human Genome Research Institute
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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Last Updated : Sunday, July 17, 2022