In time-honoured tradition, the Thalassaemia International Federation (TIF) is organising many diverse activities for the International Thalassaemia Day. Celebrated on the 8th of May every year, these activities aim to sensitise the decision and policy makers and the health and patient committees at large on thalassaemia: How to prevent, treat and cure in a patient-centred manner.
The theme for International Thalassaemia Day 2019 (ITD 2019) is –
‘Universal access to quality thalassaemia healthcare services: Building bridges with and for patients.’
Thalassemia belongs to a family of genetic conditions affecting the human blood known as Hemoglobin disorders. It is a genetic disorder affecting the blood cells and characterized by decline, below the natural rate, in both the red blood cells and the level of hemoglobin. Hemoglobin is a substance in the red blood cells that carries oxygen, therefore the decline of hemoglobin triggers anemia.
The signs and symptoms of thalassemia depend on the type and severity of the disease. As such, some babies show signs and symptoms of thalassemia at birth; whereas others may develop signs or symptoms during the first two years of their life. Some children with an affected hemoglobin gene may not develop any thalassemia symptoms.
- Almost 7% of the total world population is infected with hemoglobin disorders.
- 300,000 – 500,000 children are born with hemoglobin disorders.
- 70% of children are born with sickle cell anemia, and the rest are living with thalassemia.
- Every year, 50-80% of children die from the sickle cell anemia.
- Every year, 50,000 – 100,000 children die from major thalassemia.
Why World Thalassemia day is celebrated
> It is celebrate to increase the awareness about the disease among common public.
> To develop a most effective prevention measure to have control on the disease.
> To motivate and encourage the common public especially youths for the blood donation in order to prevent the people suffering from thalassemia.
> To motivate doctors and other health professionals to take care of the patients especially what they need.
> To promote the people suffering from it to come to the hospital for the early detection, prevention and cure.
> To motivate the youths for the pre-marriage test to get diagnosed about this problem and prevent this disease to get inherited among new generations.
> To make the community, society, nation and world free of thalassemia and other inheritable diseases.
> To give them (people having thalassemia) equal chance of living like a normal and wellbeing person.
> To encourage government organizations to develop more heath care facilities in the vulnerable area.
> To reduce the death rate of people all over the world on international level because of the thalassemia.
> To increase the number of healthy people without thalassemia or other fatal diseases in the country and world.
Thalassemia in India
India has a huge burden with an estimated 100,000 patients with a β thalassemia syndrome and around 150,000 patients with sickle cell disease, but few among them are optimally managed, and allogeneic stem cell transplant is unaffordable for the majority of families.
Strategies to control thalassemia need to include:
A feasible option for control is to promote education and awareness programmes, intensify screening in all the states with micromapping to assess the true burden, and develop adequate facilities for genetic counselling and prenatal diagnosis in public sector Institutions. Government and non-government organizations have been working towards this goal for the last 3 to 4 decades but community control in a vast and diverse country is challenging and a national programme reaching all rural regions where almost 70% of the population resides is yet to begin.
1) Educating health professionals, school and college students, pregnant women and the population at large
2) Establishing prenatal diagnosis facilities in different regions of the country.
3) Setting up a greater number of Day Care Centres for managing existing thalassemia patients
4) Developing cost-effective facilities for stem cell transplantation across the country.
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