Today, May 8th, marks World Thalassemia Day, a day dedicated to raising awareness about thalassemia, a genetic blood disorder that affects millions of people worldwide.
This year’s theme is “Strengthening Education to Bridge the Thalassaemia Care Gap”.
The objective of the theme is to improve the knowledge and skills of individuals impacted by thalassemia, with the aim of reducing the disparity in thalassemia treatment.
Thalassemia is a genetic blood disorder that affects the body’s ability to produce hemoglobin, the protein in red blood cells that carries oxygen to the body’s tissues. People with thalassemia produce fewer healthy red blood cells and may experience symptoms such as fatigue, weakness, and anemia.
In severe cases, thalassemia can lead to organ damage, heart failure, and even death. According to a report approximately 100,000 patients are suffering from Thalassemia in Pakistan and every year 5,000 babies are born with this deadly disease.
The disorder is most common in the Mediterranean region, Middle East, South Asia, and Southeast Asia.
As per World Health Organization (WHO), thalassemia is prevalent in many parts of the world, with an estimated 270 million carriers worldwide.
On World Thalassemia Day, organizations and individuals around the world are coming together to raise awareness about the disorder and the importance of early diagnosis and treatment.
In many parts of the world, thalassemia is still not well understood, and patients may face stigma and discrimination due to their condition.
History
The Thalassaemia International Federation (TIF) established and organized the first World Thalassaemia Day in 1994, to bring global attention to the condition and its impact on individuals, families, and communities.
The TIF was founded by Mr Panos Englezos, Thalassaemia patients, and their parents from the UK, USA, Greece, Italy, and Cyprus in 1986.
The day was created in memory of Mr Panos’ son, George, who had passed away due to Thalassaemia.
Through various initiatives and events, the day aims to encourage early screening and detection, improve access to care and treatment, and support the needs and rights of those living with thalassemia.
