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Thalassemia: cultural and historical perspectives

One theory that has developed to explain the high prevalence of thalassemias in people with Southern European, Middle Eastern and South Asian descent is that (once again similarly to sickle-cell) the mutation that causes thalassemia is thought to offer a degree of protection against malaria. This adaptation could account for the ability of people to survive in historically malaria-ridden environments, where others would not be able to cope. This genetic superpower of sorts has been extensively studied, picked up positively in the press, and the idea of beneficial mutation as a “superpower” has even been adopted by some patients as a creative way of interpreting their condition and challenging…

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Featured

 NHS to offer ‘life-changing’ gene therapy for blood disorder thalassaemia

The therapy is hoped to be a lifetime cure. In international clinical trials, 93% of patients with beta thalassaemia did not need a blood transfusion for at least a year after having the treatment. Amanda Pritchard, the chief executive of the NHS, said: “This is a historic moment for people living with beta thalassaemia, with a potential cure for those facing this debilitating disorder now available on the NHS.

 Thalassemia: Invisible for some, deadly for others

In the past, certain severe forms of thalassemia were a death sentence. With the continuing advance of medical science, there are viable treatment options for many thalassemia sufferers, ranging from blood transfusions to potentially curative bone marrow transplants and gene therapies. As this area continues to develop, we can hope for even more effective and accessible therapies to combat symptomatic thalassemias.

Articles of Interest

Why a Genetic Blood Disorder Seems to Protect Against Malaria

Researchers believe they have figured out why a genetic blood disorder found in the tropics protects against death from malaria.

Blood Disease Protects Against Malaria In An Unexpected Way, Study Shows

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.

Cord Blood Treatments Today – Thalassemia Major

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.

Cure Thalassemia

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.

Egypt doctors call for premarital screening to detect Thalassemia

The genetic blood disorder affects an estimated 9 percent of Egypt’s population

Exploring the protective effects of thalassemia against malaria in Africa: a systematic review

Thalassemia, a hereditary blood disorder characterized by abnormal hemoglobin production, is prevalent in malaria-endemic regions, particularly among individuals of African descent. This hemoglobinopathy is believed to confer protection against malaria, reducing the severity of the disease and its associated complications.

Living With Thalassemia Inspired the Creation of an Anemia Detection App

AnemoCheck gives him a better idea of where his hemoglobin levels are so he can work alongside his team to make more informed health decisions.

Of blood and courage: Rokeya’s life with thalassemia

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.

Real Stories from People Living with Thalassemia

Living with the complications of thalassemia can be challenging. However, with treatment, people with thalassemia can manage their symptoms.

Reduced Risk of Uncomplicated Malaria Episodes in Children with Alpha+-Thalassemia in Northeastern Tanzania

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.

Secret Benefits of Thalassemia

Many immunologists believe that this immunity to malaria diseases that is associated with Thalassemia is a result of Darwinian genetics.

Thalassemia in Sicily

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.

Thalassemia minor: ain’t heredity grand?

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.

The life of patients with thalassemia major

Thalassemia used to be a pediatric disease, but the median age of the patients has now increased in European Mediterranean countries, because of increased survival and birth rate reduction. Population screening, genetic counseling, and the availability of prenatal diagnosis have been extremely effective.

Understanding Thalassemia Trait

Seeing “thalassemia trait” on a blood test can be confusing or alarming, especially if you were told you have anemia or small red blood cells. The most important thing to know right away is that thalassemia trait is not a disease. It is a benign genetic carrier state that you are born with and will have for life. It does not damage organs, limit activities, or shorten lifespan. Thalassemia trait is usually discovered because routine blood tests show small red blood cells (a low MCV), sometimes with mild anemia, even though iron levels are normal. This pattern can look like iron deficiency, but it is not caused by low iron.

World Distribution, Population Genetics, and Health Burden of the Hemoglobinopathies

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.

Resources

5 things you need to know about Thalassamia

Many parents get depressed by the birth of a baby with some genetic disorder. As per the study conducted by World Health Organization (WHO) 10 in every 1000 new born suffer from genetic disorders and “Thalassemia” is one of the most common one. Thalassemia is a genetic blood disorder which leads to the abnormal formation of hemoglobin. The symptoms are of various kinds and can vary as well. If one of the parents is a carrier of this disorder then the chances of the child also being a carrier is 50%. If both the parents are a carrier of the disorder, then the chances of having a child with Thalassemia major is 25%.

Rethink Thalassemia

It may not be apparent, but serious risk of comorbidities can exist regardless of transfusion history

ThalTracker

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.

International Thalassaemia Day

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.

Thalassaemia International Federation

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.

Thalassemia & Sickle Cell Society

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.

Thalassemia N Me

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.

Thalassemia Patients and Friends

A message for all parents who are thals. Keeping your iron load under control is an absolute obligation to your children.

Thalassemia silence killed new generation

Promotes awareness for premarital thalassemia screening...

Thalassemia.com

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.

Beta Thalassemia Major & LIVING

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.

Cooley’s Anemia Foundation

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

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

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.

NHS Sickle Cell & Thalassaemia Screening Progamme

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.

Thalassaemia Society of Pakistan

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.

Thalassemia and Sickle Cell Australia

TASCA puts great effort towards raising public awareness of genetic haemoglobin disorders including thalassaemia and sickle cell disease.

Thalassemia Foundation of Canada

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.

Thalassemics India

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.

United Kingdom Thalassaemia Society

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.

Blood Disorders

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...

NHS

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.