International Thalassaemia Day | Theme, Awareness, Facts

 International Thalassaemia Day

Pakistani children affected by Thalassemia being treated by blood transfusion at Fatmeed and Sundas Foundation Center as the world observed World Thalassemia Day in Lahore.(Getty)

International Thalassaemia Day is an annual event held on May 8th to raise awareness about thalassemia, a genetic blood disorder that affects the production of hemoglobin, the protein that carries oxygen throughout the body. This hereditary condition is often passed down through families and affects millions of people worldwide.

The primary goal of International Thalassaemia Day is to increase public awareness about the disorder, its symptoms, and its impact on individuals and families. It aims to promote early diagnosis, appropriate management, and access to quality healthcare for people with thalassemia.

International Thalassaemia Day was first observed in 1994 and has since been recognized globally. The day is celebrated through various activities, including seminars, conferences, awareness campaigns, and blood donation drives.

Pakistani Thalassemia affected child treated by blood transfusion at Sundas Foundation Center as world observed World Thalassemia Day in Lahore(Getty)

International Thalassaemia Day highlights the importance of education, early detection, and access to treatment to reduce the prevalence and impact of thalassemia. It also aims to support the thalassemia community, raise awareness of their needs, and advocate for their rights.

What is Thalassemia

Illustration showing malformed red blood cells in thalassemia. Thalassemia is an inherited blood disorder that causes the body to have less haemoglobin.(Getty)

Thalassemia is a genetic blood disorder that affects the body's ability to produce hemoglobin, a protein that carries oxygen in red blood cells throughout the body. This condition causes a decrease in hemoglobin production, leading to anemia, fatigue, and other health issues. The disorder is caused by mutations in genes responsible for regulating hemoglobin production. Depending on which genes are affected, either alpha or beta thalassemia can occur. Alpha thalassemia results from mutations that impact alpha globin production, while beta thalassemia results from mutations affecting beta globin production. Although thalassemia can affect people of any ethnicity, it is most commonly found in individuals of Mediterranean, Middle Eastern, and Southeast Asian descent. Treatment options for thalassemia include blood transfusions, iron chelation therapy, and other medical interventions.

Thalassemia Day theme 2023

World Thalassemia Day's theme for this year is "Be Aware. Share. Care." This theme encourages individuals to collaborate with communities worldwide to promote awareness of Thalassemia and its potential treatment alternatives.

What is Thalassemia new name?

Thalassemia is still commonly referred to by its original name. However, there are several types and subtypes of thalassemia that have been identified, and they may be referred to by specific names depending on the specific genetic mutations involved. For example, beta thalassemia is also known as Cooley's anemia, while alpha thalassemia is sometimes referred to as HbH disease or hydrops fetalis. It's important to note that these are all still types of thalassemia, and the term "thalassemia" is still used as the general name for this group of genetic blood disorders.

What is the capital of Thalassemia?

Thalassemia is a medical condition characterized by abnormal hemoglobin production leading to anemia. It is a genetic disorder and not a geographical location, therefore, there is no capital of thalassemia.

Yemeni healthcare workers examine a patient at the Yemen Society for Thalassemia and Genetic Blood Disorders (YSTH) in the capital Sanaa on March 21, 2022(Getty)

However, there are certain regions in the world where thalassemia is more prevalent due to a higher frequency of carriers of the thalassemia gene. These regions include parts of the Mediterranean, Middle East, and Southeast Asia. The exact prevalence and severity of thalassemia vary among these regions and even within different populations within the same region.

It is important to note that while thalassemia is a genetic condition with no cure, it can be managed through regular blood transfusions, iron chelation therapy, and other treatments.

Who named Thalassemia?

The term "thalassemia" was first coined by Dr. Thomas B. Cooley, an American pediatrician, in 1925. Dr. Cooley was studying a group of children of Italian and Greek descent who exhibited severe anemia, enlarged spleens, and other related symptoms. He named the condition "thalassemia" after the Greek words "thalassa" (sea) and "emia" (blood disorder), as he had observed the condition in children from the Mediterranean region.

Since then, the term thalassemia has been widely used to refer to a group of inherited blood disorders that affect the production of hemoglobin, the protein in red blood cells that carries oxygen throughout the body. The condition is now known to have several different types and subtypes, each with its own specific genetic mutations and clinical features.

What are the 4 types of Thalassemia?

Thalassemia refers to a group of genetic blood disorders that affect the production of hemoglobin, the protein that transports oxygen throughout the body in red blood cells. The two main types of thalassemia are alpha thalassemia and beta thalassemia, each with several subtypes or variants. The most common types are:

Beta thalassemia major: 

This is the most severe form of beta thalassemia, which results in a severe anemia due to the body's inability to produce sufficient beta globin chains. Regular blood transfusions are required to manage this condition.

Beta thalassemia intermedia: 

This is a milder form of beta thalassemia, where the body can produce some beta globin chains, but not enough to prevent anemia.

Alpha thalassemia major: 

This is the most severe form of alpha thalassemia, which can be life-threatening due to the body's inability to produce any alpha globin chains. Regular blood transfusions are required to manage this condition.

Alpha thalassemia minor: 

This is a milder form of alpha thalassemia, where the body can produce some alpha globin chains, but typically not enough to cause symptoms.

It is important to note that there are other subtypes and variations of thalassemia, and the severity of the condition can vary widely depending on the specific genetic mutations involved. Treatment options also vary depending on the type and severity of thalassemia.

Why is Thalassemia called sea blood?

Thalassemia is an inherited blood disorder that impacts the production of hemoglobin, a protein found in red blood cells that carries oxygen throughout the body. The term "sea blood" is not a widely accepted term for thalassemia, and its origin is not clear.

It is possible that the term "sea blood" came about due to the higher prevalence of thalassemia in certain areas around the Mediterranean Sea, such as Greece, Italy, and Cyprus. Thalassemia has been present in these regions for thousands of years and is believed to have developed as a genetic adaptation to protect against malaria, which was once prevalent in these areas.

It is important to note that "sea blood" is not a medically recognized term for thalassemia, and it is not commonly used in the medical field. Diagnosis of thalassemia typically involves blood tests and ongoing medical management and treatment.

What is the diet for Thalassemia?

Thalassemia is a medical condition that impacts the production of hemoglobin, the crucial protein in red blood cells that carries oxygen to various parts of the body. There is no specific diet that can cure or treat thalassemia, but a healthy and balanced diet can help manage the symptoms and complications of the condition.

Individuals with thalassemia may require frequent blood transfusions, which can cause an iron overload in the body. To reduce the risk of iron overload, it is important to avoid iron-rich foods such as red meat, liver, and shellfish.

A well-balanced diet that includes plenty of fruits, vegetables, whole grains, and lean protein sources such as fish and poultry is recommended. Calcium-rich foods such as dairy products, leafy green vegetables, and fortified cereals can also be beneficial to maintain strong bones, which can be affected by the disease.

Individuals with thalassemia should also avoid alcohol, as it can increase the risk of liver damage, which is already a potential complication of the disease. Additionally, it is important to stay hydrated by drinking plenty of water and avoiding sugary drinks.

It is recommended to work with a healthcare professional, such as a registered dietitian, to develop a personalized nutrition plan that meets the specific needs of individuals with thalassemia.

Thalassemia awareness program

A thalassemia awareness program is a public health initiative aimed at increasing knowledge and understanding of thalassemia, a genetic blood disorder that affects the body's production of hemoglobin. The goal of such a program is to educate individuals, families, and communities about thalassemia, its causes, symptoms, and treatment options.

Children seen holding placard with a message to create awareness on Thalassaemia during the event(Getty)

The program may involve various activities, such as:

Educational seminars and workshops: 

These can be held in schools, community centers, or medical facilities to provide information about thalassemia and its impact on individuals and families.

Screening and testing:

 Screening and testing programs can be implemented to identify individuals who may be carriers or affected by thalassemia.

Outreach and advocacy: 

Outreach efforts can be made to promote thalassemia awareness and advocacy efforts to improve access to treatment options and support services for affected individuals and families.

Public service announcements: 

Public service announcements can be created to increase awareness about thalassemia and its impact on individuals and communities.

Collaboration with healthcare providers: 

Collaboration with healthcare providers can help ensure that individuals with thalassemia receive proper diagnosis, treatment, and care.

Overall, a thalassemia awareness program can help reduce the burden of this genetic disorder on individuals, families, and communities by increasing awareness, promoting prevention, and improving access to care.