1000s have this disease, but most never discover it: Observing World Thalassemia Day, 2023
4 Min Read
Did you know that May 8th is commemorated as World Thalassemia Day? It is a day dedicated to raising awareness about thalassemia, a genetic blood disorder that affects millions of people worldwide.
In this article, we’ll cover all things about thalassemia.
Why do we observe World Thalassemia Day?
The main objective of this day is to educate people about the prevention and management of thalassemia and increase awareness about this genetic disorder.
It may surprise you to know that India has the highest number of children suffering from thalassemia worldwide.
Did you know?
- Around 1.5 lakh children suffer from thalassemia major (TM), and 42 million people are carriers of beta-thalassemia.
- In addition, approximately 15,000 babies are born with thalassemia major each year.
- Certain communities, such as Gujaratis, Sindhis, Punjabis, Bengalis, Mahars, Kolis, Gaurs, and Lohanas, are more susceptible to thalassemia*.
World Thalassemia Day is also a day to celebrate the strength and bravery of individuals living with thalassemia.
What is this year’s theme for World Thalassemia Day?
The theme for World Thalassemia Day 2023 is “Be Aware. Share. Care: Strengthening Education to Bridge the Thalassaemia Care Gap.”
This means that it’s important to share knowledge and educate people about thalassemia to improve the care given to those who have it. We all need to work together to raise awareness and ensure that these individuals receive the care they need. Let’s support this important cause by strengthening education and spreading awareness about thalassemia.
So, what exactly is thalassemia?
Thalassemia is a form of genetic blood disorder that affects the production of hemoglobin, a protein that carries oxygen to the rest of your body.
People with thalassemia have abnormal hemoglobin production, leading to anemia, fatigue, and other health complications. You can read more about the symptoms of thalassemia here.
Types of thalassemia
There are two main types of thalassemia. They are alpha thalassemia and beta thalassemia.
So what are they?
Your hemoglobin is made up of two proteins —
- Alpha globin and
- Beta globin.
When there is a genetic defect in these two proteins, it can cause thalassemia, as described below:
- Alpha thalassemia: This occurs when there are mutations in the alpha globin genes.
- Beta thalassemia: This occurs when there are mutations in the beta-globin genes.
Now, thalassemia can be inherited either from one parent or from both parents.
If you inherit a defective gene from one parent, you’ll develop beta thalassemia minor. People with this form of thalassemia are often carriers, meaning most of the time, they will not show any symptoms.
However, if you inherit a defective gene from both parents, you’ll develop beta thalassemia major, a more severe form of thalassemia with mild to severe symptoms.
Having said that, the severity of this disease also depends on the number of mutated genes. For example, if beta-thalassemia has two or three mutated genes, it can also cause severe symptoms.
Why is it called “thalassemia”?
The term “thalassemia” comes from the Greek words “thalassa,” meaning sea, and “emia,” meaning blood. The disorder was first identified in the Mediterranean Sea, hence the name “thalassemia.”
However, this disease is also more prevalent in Africa, the Middle East, and Asia, with India having the largest population of thalassemia patients in the world.
Which type of thalassemia is more common?
Beta-thalassemia is the most common type of thalassemia, affecting millions of people worldwide.
It is more prevalent in Mediterranean, Middle Eastern, and South Asian populations.
Who is at risk of thalassemia?
Thalassemia is a genetic disorder, which means it is inherited from one or both parents who carry the thalassemia gene.
Individuals from Mediterranean, Middle Eastern, and South Asian populations are at a higher risk of inheriting thalassemia.
Can thalassemia be cured?
Currently, there is no cure for thalassemia, but it can be managed with regular blood transfusions, chelation therapy, and bone marrow transplants.
Which test is done for thalassemia?
Looking to get a blood test done for thalassemia? We offer a variety of services that can be accessed through our easy-to-use app, including the essential hemoglobin electrophoresis test.
At MFine, we understand that convenience is key, which is why we offer doorstep delivery of our services. Simply book an appointment with us, and we will arrange for a blood sample collection at your home or at one of our partner laboratories.
Also, if you’re concerned about the health of your unborn baby, we can help with that too! We offer prenatal testing to determine if your baby has thalassemia and to assess its severity.
Tests like chorionic villus sampling and amniocentesis are used to diagnose thalassemia in fetuses, and our experienced healthcare providers will be there to guide you through the process.
Trust us to provide you with accurate, reliable test results.
How is thalassemia treated?
- Regular blood transfusions to help people improve the quality of their lives.
- Chelation therapy to remove the excess accumulation of iron, which can build up in the body due to frequent blood transfusions, and
- A bone marrow transplant may be the only way to get better in severe cases.
To provide a brief overview, the purpose of World Thalassemia Day is to increase people’s awareness of thalassemia and educate them on the disease’s management and prevention. Individuals who have thalassemia can live a healthy and fulfilling life if they are diagnosed at an early stage and given the appropriate treatment.
Let’s get the word out about this disorder and help those who are suffering.
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