INTERNATIONAL THALASSAEMIA DAY
Every year on May 8th, International Thalassaemia Day commemorates thalassaemia patients who are no longer with us. It’s also a day to celebrate the patients that are alive and fighting for a better quality of life.
Thalassaemia is a genetic hemoglobin disorder. Hemoglobin is the iron-rich protein found in red blood cells. The function of hemoglobin is to transport oxygen to the blood. A person with thalassaemia has less than normal amounts of hemoglobin. This can make life very difficult, as it usually requires multiple blood transfusions. Some people with the disease need a blood transfusion every two weeks.
According to the latest statistics, around 280 million people throughout the world have thalassaemia. About 439,000 have a severe form of the disease. Thalassaemia is most common in the following ethnic groups:
- Middle Eastern
- South Asian
Thalassaemia causes a variety of symptoms in the body. Some of these symptoms include anemia, fatigue, dizziness, shortness of breath, increased risk of infections, and abdominal swelling. Some people with thalassaemia also have too much iron in their system. When the body has too much iron, it can damage the heart and liver.
Children with this condition often experience a failure to thrive. This means they grow slowly. Children with thalassaemia might also have skull bones that are not shaped normally. For most children, these symptoms show up within the first two years of life.
HOW TO OBSERVE INTERNATIONAL THALASSAEMIA DAY
Every year the Thalassaemia International Federation (TIF) comes up with various activities that spread awareness for thalassaemia. The goal for these activities is to fuel discussions centering around the theme for the year. If you would like to participate, find out how you can support the work of the TIF. You can also learn more about thalassaemia and other hemoglobin disorders or donate blood. Spread awareness for this day with #InternationalThalassaemiaDay.
INTERNATIONAL THALASSAEMIA DAY HISTORY
The president and founder of TIF, Panos Englezos, established International Thalassaemia Day in 1994. He created the day in memory of his son, George, who lost his life to thalassaemia. Each year the TIF creates a special theme for the day. Recent themes have included:
2020: The dawning of a new era for thalassaemia: Time for a global effort to make novel therapies accessible and affordable to patients.
2019: Universal access to quality thalassaemia healthcare services: Building bridges with and for patients.
2018: Thalassaemia past, present, and future: Documenting progress and patients’ needs worldwide.
2017: Get connected: Share knowledge and experience and fight for a better tomorrow in thalassaemia.
2016: Access to safe and effective drugs in thalassaemia.