Talasemia adalah kecacatan genetik yang paling biasa didapati, dengan kira-kira 250 juta orang, 4.5 peratus daripada penduduk dunia adalah pengidap yang menghadapi ancaman maut. Pada 2010, Malaysia merekodkan 4,768 orang pesakit talasemia yang memerlukan pemindahan darah yang kerap. Manakala 5% daripada penduduknya adalah pembawa.



International Thalassaemia Day - 8th May


“The improvement of understanding is for two ends: first, our own increase of knowledge; secondly, to enable us to deliver that knowledge to others.”
- John Locke (1632–1704)

This year’s theme for 8th May has two aspects. The first is the patient’s knowledge and information. At TIF we believe that an informed patient is an empowered patient: the more you know, the better you can manage your condition and your life. The more you know, the better you can interact with your doctors and other carers. And when a lot of knowledgeable, strong individuals come together and join efforts, their collective voice will be even stronger.

Knowledge is power
How often have doctors, nurses and other health professionals said about their patients, particularly those with chronic conditions: “My patients understand their disease better than I do!” The experience and knowledge held by the patient can greatly benefit patient care and quality of life, something which gradually is becoming more recognised by the medical world.

Today’s knowledgeable patients can make decisions regarding their treatment and work in partnership with their doctors, rather than simply being passive recipients of instructions. But in order to do this, the patient needs the power that comes through education and information. This has long been, and still is, one of TIF’s main educational aims.

Sharing the knowledge
The second aspect, as so wisely expressed by the great Enlightenment philosopher, is sharing the knowledge. Patients working together with other patients, parents, volunteers and health professionals – creating associations, getting involved in health policy formulation at a local, then national and even international level. We can really make a difference, not just for ourselves, but for others, too!

The idea of the 2010 slogan is to encourage every patient to become educated, but also to recognise her/his already-existing knowledge, to use it and share it.

© 2008 Thalassaemia International Federation


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