World Thalassemia Day

Thalassemia is an inherited blood condition that disrupts the body’s ability to produce sufficient hemoglobin and red blood cells. Hemoglobin is a crucial protein in red blood cells that transports oxygen throughout the body. Individuals with thalassemia typically have lower levels of healthy red blood cells and hemoglobin, which can cause anemia, persistent tiredness, and other health issues. There are different forms of thalassemia, such as alpha and beta thalassemia, which range in intensity. Some people carry the gene without showing symptoms—a state known as the thalassemia trait—while others experience more serious types like thalassemia major, which demand frequent blood transfusions and ongoing medical treatment throughout life.

World Thalassemia Day, held every year on May 8, is an international awareness event aimed at increasing understanding of thalassemia. The day also serves to honor those living with the disorder, commemorate individuals who have passed away due to its complications, and highlight the importance of prevention through genetic screening and counseling.The observance was first established in 1994 by the Thalassemia International Federation (TIF). It was created in remembrance of patients who lost their lives to the disease and to acknowledge the continued struggles faced by individuals and families affected by this genetic condition.

The initiative was started by Panos Englezos, who founded TIF and was the father of a child with thalassemia. His personal loss and desire to advocate for millions impacted by the disease worldwide fueled the creation of this awareness day. Since then, World Thalassemia Day has been marked in more than 60 countries and is backed by global health organizations, including the World Health Organization (WHO).

The date, May 8, was chosen to commemorate George Englezos, Panos Englezos’ son, who passed away from complications related to thalassemia. This day stands as a powerful symbol of remembrance, compassion, and the global commitment to combat this manageable and preventable disorder.By designating a specific day to recognize thalassemia each year, health advocates aim to draw greater attention to the need for enhanced healthcare services, broader prevention efforts, and stronger international cooperation in addressing the disease.

On this day, May 8, we support the Indonesian community. Indonesia is among the countries within the thalassemia belt, where this inherited blood disorder cases are particularly high. Thalassemia is one of the top five most financially burdensome conditions covered by Indonesia’s national health insurance program, BPJS. This disease highlights the serious consequences of limited public awareness. Many young couples in Indonesia still marry without undergoing thalassemia screening, unaware of the potential impact it could have on their future children. Our presence today is to share vital information, because this day represents the moment where awareness brings hope into reality.

At around 6 a.m. today, we gathered at the Horse Statue area near Monas, in Jakarta, Indonesia. Dressed in red, we symbolized the urgency and importance of raising awareness about thalassemia, a genetic blood disorder. Our team was divided into two main groups: one distributed brochures and engaged with the public through simple, informative conversations; the other displayed a massive banner carrying public health messages. With calls like “Get screened before marriage” and “Be a blood donor,” our presence on the streets served as a powerful reminder of awareness's role in prevention and support.

There wasn’t much change in the usual flow of daily life—people went about their routines as normal. Yet behind the focused faces of the passersby, we could sense a quiet sense of responsibility. Some chose to stop and talk with us.

One middle-aged man greeted me warmly:

“Hello, sir.”
“Yes, how can I help you?” I replied.

He shared that his wife’s niece is a thalassemia carrier. As he spoke, my expression changed, absorbing the weight of his story.
He went on to tell me, “My own child was also diagnosed, but we discovered it by accident. The school had organized a drug test, and when they did a blood check, the doctor revealed something entirely unexpected—thalassemia.”
“I understand,” I said.

We spoke for quite some time. Eventually, he had to return to work, but he left with more knowledge about thalassemia and contact information for the Indonesian Thalassemia Foundation. It was a meaningful exchange—one more person reached, one more story shared.