Researchers believe they have figured out why a genetic blood disorder found in the tropics protects against death from malaria.
Children with an inherited blood disorder called alpha thalassemia make unusually small red blood cells that mostly cause a mild form of anemia. Now, researchers have discovered that this disorder has a benefit -- it can protect children against one of the world's greatest killers, malaria, according to a new study.
The only known cure for beta thalassemia major is a stem cell transplant. It’s an arduous process that starts with using drugs and radiation to destroy a patient’s bone marrow.
The genetic blood disorder affects an estimated 9 percent of Egypt’s population
As a thalassemia patient I must receive blood from donors, but in doing so I receive an excess of iron through the transfusion. It can be scary knowing that the very process that is saving my life can kill me.
The prevalence of human red blood cell (RBC) polymorphisms is high in areas of intense Plasmodium falciparum transmission, and individuals carrying these genetic traits are believed to be partially protected against severe malaria.
Many immunologists believe that this immunity to malaria diseases that is associated with Thalassemia is a result of Darwinian genetics.
The continuing battle against genetic diseases is a constant challenge, with tangible progress measured not in months or even years but in decades and lifetimes, as well as lives. The life of the typical thalassemia patient, wherever he or she may be, depends on the success of the most advanced medical research.
Years ago when I was in college, I took a class where I learned about sickle cell anemia and sickle cell trait, as well as thalassemia major and minor.
They seemed awesome examples of the way heredity works: inherited defects of red blood cells in which, if two genes for the flaw are inherited, the person is very ill (fatally so before modern medicine), but inheriting only one gene for the trait confers the benefit of increased resistance to malaria.
There is strong evidence from population data that malaria selection explains the current distribution of the thalassemias. First, at a global scale, both α and β thalassemia follow remarkably similar distribution to that of malaria (Livingstone 1973, 1985; Cavalli-Sforza et al. 1994), an observation that also holds true at a micro-epidemiological scale.
Thalassemia is one of the most common genetic disorder in the world. An estimated 250 million people, that is, 4.5% population of the world is affected by Thalassemia. This is just a rough estimate and the real thalassemia population can far exceed that number.
To cure (becoming thalassemia free,so no more transfusions) with Bone Marrow Transplantation (BMT) as many beta thalassemia major children as possible,who can’t afford the cost of the cure,through the cross-subsidization business model.
thalTracker is designed for adults and adolescents with Thalassemia and iron overload. It has been designed by a group of patients and Thalassemia specialists in Canada to help patients to better self-manage their chronic blood disorder.
For the global thalassaemia family, the 8th of May constitutes a very special day as it is dedicated to both commemorate the thalassaemia patients who are no longer with us but are always close in our heart and to celebrate all those patients who are alive and fighting everyday for their right to a better quality of life.
Our mission is the development and establishment of National Control Programmes for the prevention and quality treatment of thalassaemia and other haemoglobin disorders in every affected country and in particular where frequency, incidence and prevalence of these disorders are high.
Society has been actively supporting research activities for improving patients treatment and in identification of mutations status. For HLA tying and later to guide patients for a permanent cure like bone marrow transplantation(BMT), gene therapy, etc.
This website was formed to share everything on Thalassemia to my personal life. The main objective of building this website is to let everyone know more about Thalassemia condition and spreading the awareness.
A message for all parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
Promotes awareness for premarital thalassemia screening...
The purpose of this website is to raise awareness and educate the patient community, the medical community, and the community-at-large on thalassemia. Through awareness and education, we strive to increase survival rates and improve the quality of life for patients around the world.
I decided to begin an account of the struggles & triumphs my daughter faces on a daily basis, living with Beta Thalassemia Major (Cooleys Anemia). She's an amazing, vibrant, beautiful little girl, that has more experience, wisdom and grace than some adults out there. Hopefully our story will open doors to meeting & connecting with others that have similar lives.
Our mission is advancing the treatment and cure for this fatal blood disease, enhancing the quality of life of patients and educating the medical profession, trait carriers and the public about Cooley’s anemia/thalassemia major.
Emirates Thalassemia Society has always initiated in every step of benefiting towards the well being of its Thalassemia patients & spreading awareness amongst the community members through social, cultural & medical aspects.
Hemoglobal® began on the island of Sri Lanka following years of work in research and care of children in thalassemia, which is the most common blood disorder in Asia. Governed by the conviction that country of birth or family income should not determine the life or death of a child, Dr. Nancy Olivieri and Professor David Weatherall founded Hemoglobal® to help provide children in Asia with improved care to preserve their lives, and quality of life.
Our goal is to develop a linked programme of high quality screening and care in order to:
•Support people to make informed choices during pregnancy and before conception.
•Improve infant health through prompt identification of affected babies.
•Provide high quality and accessible care throughout England.
•Promote greater understanding and awareness of the disorders and the value of screening.
The Society was established in 1994 and is an organization of volunteers from all walks of life, who have dedicated themselves to achieve the following goals: 1) Provide the best care and treatment for children with Thalassaemia
2) Create awareness about Thalassaemia
3) Prevention through prenatal diagnosis.
TASCA puts great effort towards raising public awareness of genetic haemoglobin disorders including thalassaemia and sickle cell disease.
The Mission of the Thalassemia Foundation of Canada is to support and fund thalassemia scientific research, treatment, patient services, public awareness and education. Established in 1982, originally began as a small support group for parents and patients.
Established in 1986, Thalassemics India was conceived to check and help deal with Thalassemia. A non-governmental organization, Thalassemics India is working zealously across the country, operating in close association with doctors, drug/equipment companies throughout the country and abroad, hospitals, Thalassemia associations & thalassemia centers.
To be the definitive source of information, education and research for those affected by or working with thalassaemia. The research into a new drug, "Deferiprone", an oral chelator, was funded by the Society outside of the pharmaceutical industry and is now being used in the treatment of thalassaemia.
Thalassemia is derived from the Greek word
“thalassa” meaning “the sea” because the condition
was first described in populations living near
the Mediterranean Sea. However, it is now very
well known that alpha- and beta-thalassemia are
the most common inherited single-gene disorders
in the world with the highest prevalence in areas
where malaria was or still is endemic...
It's not known exactly what causes the genetic mutations associated with thalassaemia. However, it's likely they've survived because carriers of the condition (both alpha and beta thalassaemia) are protected against malaria.