We can say that World Thalassaemia Day is observed to encourage those who struggle to live with the disease.This day is a commemoration day in the honour of all patients suffering from thalassaemia and their parents who have never lost hope for life, despite the burden of their disease and also to all scientists who are doing hardwork with dedication and trying to provide improved quality of life to people with thalassaemia across the globe.
What is Thalassaemia Disease?
It is an inherited blood disorder which passes from parents to children. There are several types of thalassaemia disease and its treatment depends on its types and severity. In this disease the ability of the body to produce haemoglobin and red blood cells gets affected. Or we can say that a person suffering from thalassaemia disease will have few red blood cells and very little haemoglobin. Its impact may range from mild to severe and life-threatening also. This disease is most common with Mediterranean, South Asian and African ancestry.
So, this day is dedicated to the patients suffering from thalassaemia disease and provides them a special chance to live like a normal person and also to prevent the spread of the disease in the society, state, community, country etc.
World Thalassaemia Day 2019: Theme
World Thalassaemia Day theme 2019 is “Universal access to quality thalassaemia healthcare services: Building bridges with and for patient”.
3 online competitions are organised by the Thalassaemia International Federation (TIF) across the world according to the theme. The competition will include video challenge, photo contest and a story competition. It will showcase the solidarity with the patient suffering with the disease. In several hospitals around the world conduct seminars, discussions and talks to devise the new techniques and medication to fight this inherited disease. Several awareness campaigns and free screening camps will also be organised to spread awareness about the disease among the people.
The theme for 2018 was: “Thalassaemia past, present and future: Documenting progress and patients’ needs worldwide”.
The theme for 2017 was “Get connected! Share knowledge and experience and fight for a better tomorrow in thalassaemia”.
The theme for 2016 was “Access to Safe & Effective Drugs in Thalassaemia”.
The theme for 2015 was “Enhancing partnership towards patient-centred health systems: good health adds life to years!”
How World Thalassaemia Day is celebrated?
Several activities and events are organised in the public places like schools, colleges, educational institutions to aware people about the disease, its symptoms and preventive measures. Also, patients and their family members are encouraged to participate in the event to gain knowledge about the disease. Let us tell you that the Thalassaemia International Federation (TIF) is a non-profit and non-governmental patient-driven organisation which actively involves in organising the celebration of the event with the associated members in several countries. Not only this even World Health Organisation and other health bodies focus on the basic rights of the patients suffering from thalassaemia disease.
Posters and banners are also prepared to make people aware. Several activities like debates on health related subjects, discussion about thalassaemia disease about the patient’s quality of life etc. are also organised. TIF also spread information about hemoglobinopathies, haemoglobin disorders and iron deficiency among the people especially young ones. Even educational materials about the thalassaemia disease are also distributed among people and youth. TIF also organise Red Day Activities at many places where students wear red T-shirts which indicate the characters of red-blood cells showing the requirement of thalassaemic patients.
World Thalassaemia Day: Objective
- To raise awareness about the disease, its symptoms and ways to live with it.
- If the person is suffering from thalassaemia and before his or her marriage it is important to consult a doctor.
- To raise awareness about the importance of vaccination for children's health, society and the whole world.
- Redress misconceptions about vaccinations.
What are the symptoms of Thalassaemia disease?
Do you know that until the age of 6 months symptoms does not occur in most of the infants suffering with beta thalassaemia and some types of alpha thalassaemia. Because it is said that neonates have a different type of haemoglobin known as fetal haemoglobin.
And after 6 months normal haemoglobin starts replacing the fetal type and symptoms may began to appear like:
- Drowsiness and Fatigue
- Chest pain
- Shortness of breath
- Delayed growth
- Jaundice and pale skin
- Dizziness and faintness
- Greater susceptibility to infections etc.
What is World Thalassaemia Federation?
It is a non-profit and non-governmental organisation consisting of 108 members associated from all over the world in almost 55 countries and officially related to WHO and other major health related agencies since 1996. Do you know this organisation is responsible for improving the quality of life, health and the life expectancy of the thalassaemia patients and the patients with other inherited congenital haemoglobin disorders?
So, we can say that thalassaemia is an inherited disease and World Thalassaemia Day is celebrated on 8 May to increase awareness among the common people about this disease, its symptoms and preventive measures.