New Delhi: International Thalassaemia Day is observed annually on May 8, and is dedicated to raising awareness about thalassaemia. The Thalassaemia International Federation (TIF), which is a non-profit organisation founded in 1986 by a small group of patients and parents, has been organising many diverse activities for International Thalassaemia Day, every year since 1994.
This year, the theme for International Thalassaemia Day focuses on enabling thalassaemia patients and the community at large to have equitable access to knowledge and resources that will strengthen their capacity to take preventative action, change attitudes towards carriers and patients with the disease, and better safeguard and manage their own health, the TIF said on its website.
What Is Thalassaemia?
Thalassaemia is an inherited blood disorder caused when the body does not make enough of a protein called haemoglobin, an important component of red blood cells (RBCs) as a result of which the RBCs do not function properly and last shorter periods of time, and fewer healthy RBCs travel through in the bloodstream. Thalassaemia patients may feel tired, weak, and suffer from shortness of breath because in the absence of sufficient healthy RBCs, not enough oxygen is delivered to the other cells of the body.
International Thalassaemia Day: History
In 1994, the TIF established the 8th of May as “International Thalassaemia Day” in loving memory of George Englezos, the son of the organisation’s President and Founder, Panos Englezos, and all other thalassaemia patients who are no longer with us.
According to the TIF, George belonged to the new generation of patients with thalassaemia who had the privilege to receive quality therapy that allowed him to compete on equal terms with other people his age in school, receive higher education abroad, and become a full-fledged scientist.
When George and other patients with thalassaemia began to succeed in the professional arena and have their own families, social prejudice started to fade. Their personal fight, as well as the ceaseless fight of their parents, were the reasons behind their success. The parents not only confronted the social stigma associated with genetic conditions such as thalassaemia at that time, but also participated in and strengthened Anaemia Associations.
Together with doctors and nurses, the parents worked to raise social and state awareness about thalassaemia and the needs of the patients with this condition.
International Thalassaemia Day: Significance
Every year, International Thalassaemia Day is celebrated on May 8 to raise awareness amongst the general public and decision-makers about thalassaemia, promote and strengthen the lifelong and difficult struggle of patients against the severe blood disease, and commemorate all the people who are no longer with us.
The objective of International Thalassaemia Day is to draw the attention of general public, patient associations, public authorities, healthcare professionals, and industry representatives to promote actions on a particular theme related to the prevention, management or treatment of the disease in a patient-centred manner.
On this day, people renew their promise to keep fighting until the final cure of thalassaemia is found.
International Thalassaemia Day 2022: Theme
The theme for International Thalassaemia Day 2022 is “Be Aware. Share. Care: Working with the global community as one to improve thalassaemia knowledge.”
This year International Thalassaemia Day calls for people to recognise and celebrate the power of knowledge.
The theme is an open call to action to all supporters to promote awareness about thalassaemia and its global impact and share essential information and knowledge to support the best possible health, social, and other care of patients with the disease, the TIF said on its website.
The International Thalassaemia Day 2022 theme seeks to inspire every individual to contribute, at the personal level, to fight against thalassaemia and serves as a powerful reminder that every person has a substantial role to play and a responsibility to maintain.
Unawareness, lack of disease-specific knowledge, and poor health literacy are even more striking in developing countries of the world, where more than 80 per cent of patients with thalassaemia are born and live, and not only do these factors have a major impact on health outcomes, but can also be diverse in society and affect quality of life.
The TIF has urged people to be part of International Thalassaemia Day 2022 and help transform the lives of millions of people across the globe.
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