Understanding Thalassemia: Spreading Awareness, Promoting Care, and Inspiring Blood Donation

 

Last week, a blood donation camp was organized at Savitribai Phule Pune University. The event was organized by a group of artistic students called "Houshi Lok" along with an organization called The Wishing Factory and Sassoon Hospital. The Wishing Factory helps people with a serious blood condition called thalassemia and blood cancer. Houshi Lok consists of creative students from the university. I came to know about that blood donation camp when I went for lunch in the university and decided to donate blood. As I was donating blood, a girl approached me and explained that the purpose of the event was to collect blood for thalassemia patients. She briefed me about what thalassemia is and who affects from it. Before this, I had no knowledge about thalassemia. Her explanation left a strong impression on me, prompting me to research more about the condition later.

Thalassemia is a special problem in the blood that you get from your mom or dad. It makes it hard for your body to make something called hemoglobin. Hemoglobin is like a helper in your blood that brings oxygen to your body parts. Oxygen is like the fuel that keeps your body strong and healthy. But with thalassemia, your body doesn't make enough healthy blood cells, so you might feel tired and weak because your body doesn't get enough oxygen. This problem is called anemia. This blood issue affects a lot of people globally. Thalassemia is a condition that has been passed down through genes for many centuries, but its exact nature and reasons weren't understood until modern medical studies started. It's generally believed that it's more common in places where malaria was a big problem in the past.

In India, there are a lot of children dealing with the serious form of thalassemia, around 100,000 to 150,000, and there are about 42 million carriers of the ß (beta) thalassemia trait. Researchers in the early 1900s started to split thalassemia into two main kinds: Thalassemia major and Thalassemia minor.

Thalassemia major is severe and can even lead to death in babies. This happens when a person gets two changed genes, one from each parent. These genes have mutations, which means they've gone through some changes in their genetic makeup. People with Thalassemia major need a lot of blood taken out and medical attention.

Thalassemia minor is usually not as serious. The person only gets one changed gene, either from the mom or the dad. People with thalassemia minor might not feel a lot of symptoms and can live like everyone else.

The following symptoms of thalassemia major usually appear in the first two years after birth: fatigue and weakness pale skin slow growth and stunted development enlarged spleen (which Helps in cleansing, removal of damaged blood cells and accumulation of platelets), formation of deformed bones etc. In thalassemia minor, however, the symptoms are usually very mild, making it undetectable without a blood test.

Currently, there isn't a complete cure for thalassemia, but treatments can make the condition better. People with thalassemia major need frequent blood transfusions. That's why they need a steady supply of blood.

Thalassemia has two main types: Alpha thalassemia and beta thalassemia.

Alpha Thalassemia: Alpha thalassemia happens when there's a change or something missing in the gene that makes alpha globin. Alpha globin is really important for hemoglobin. How bad alpha thalassemia is depends on how many alpha globin genes are affected.

Alpha thalassemia has these types:

Alpha Thalassemia Silent Carrier: Only one gene is different. Usually, no signs show up.

Alpha thalassemia trait (minor): Two genes are different. You might feel a bit weak, but not too much.

Hemoglobin H disease: Three genes are different. Weakness can be moderate to severe.

Hemoglobin Bart's hydrops fetalis: Four genes are different. This is very serious and usually causes death shortly after being born.

Beta Thalassemia: Beta thalassemia is caused by changes in the genes that make the beta globin chain. Just like with alpha thalassemia, how serious beta thalassemia is depends on the changes in the genes and how many beta globin genes are affected.

Beta thalassemia has these types:

Beta thalassemia minor (trait): One gene is different. You might feel a bit weak.

Beta Thalassemia Central (intermedia): Two genes are different. Anemia can be moderate to severe, but not as bad as thalassemia major.

Beta Thalassemia Major (Cooley's Anemia): Both genes are different. This leads to severe anemia, so you need lots of blood transfusions and medical care. How it's treated depends on how serious it is and which type you have. Treatment includes regular medical visits, getting blood, using medicine to remove extra iron, and sometimes even a bone marrow transplant. This all shows that thalassemia is a complicated problem with different kinds, and it can't be fixed without medical help.

If you carry thalassemia or have a family history of it, there are things you can do before getting married or while being pregnant to prevent your children from having the disorder.

Before getting married:

Genetic testing: It's important to do genetic tests to check if you and your partner carry thalassemia. If both of you carry it, your child might also get the disorder. If both partners carry thalassemia, it's better to avoid getting married or having children.

Counseling: If you discover that both of you carry thalassemia after getting married or while expecting a child, it's wise to talk to a genetic counselor, who is a specialized doctor. They can explain the chances of having a child with thalassemia and suggest ways to plan your family.

If a test done before childbirth shows that the baby has thalassemia, talk to your doctor about what to do next. You might decide to continue the pregnancy with proper medical care, or there could be other options that your doctor will discuss based on your own situation and beliefs.

India has a significant number of thalassemia patients and many of them struggle to get regular blood transfusions and proper medical care. So we all need to raise awareness and encourage genetic counselling. Most importantly, it is very important to make people aware of the importance, necessity of blood donation. This will provide timely blood supply to thalassemia patients.

Thalassemia International Federation (TIF) is a non-profit, non-governmental organization dedicated to the care of thalassemia patients. The organization was founded in 1986 by a group of patients and parents representing National Thalassemia Associations from Cyprus, Greece, UK, USA and Italy. TIF's mission is to ensure equal access to quality health care for every patient with thalassemia and other hemoglobin disorders worldwide, as well as to promote and implement national control programs for the prevention and treatment of hemoglobin disorders.

World Thalassemia Day is celebrated every year on May 8. Theme for 2023 was Be Aware. Share. Care: Strengthening Education to Bridge the Thalassemia Care Gap.

The first World Thalassemia Day, or International Thalassemia Day, was proclaimed on May 8, 1994, by “Panos Anglezos”, the president and founder of the “Thalassemia International Federation” (TIF). The day was established in honor of Panos Anglezos' son George and the countless thalassemia patients who have battled the disease.

Thalassemia is a blood disorder that affects many people, but with proper awareness, early diagnosis and availability of medical care, patients can lead fulfilling lives. Donating blood not only helps Thalassemia patients but also fulfills other medical needs. Your act of kindness can give life to thalassemia patients and give a boost to their lives. We all should always donate blood together to help thalassemia patients and give a healthy and happy life to all.

- Krushna Dabholkar