International Thalassaemia Day-8th May

Thalassaemia is a potentially life-threatening yet preventable genetic haemoglobin disorder that constitutes the world’s most commonly inherited haemolytic anaemia.

It is highly prevalent in malaria-endemic or previously endemic parts of the world, including the Southern Mediterranean, Middle East, Southeast Asia, and Africa, but through the years and for some time now it has become a global public health concern, as a consequence of heavy population movements and increasing migration flows across the world.

Between 5-7% of the global population is a carrier of an abnormal haemoglobin gene. A percentage of this, the extent of which remains still unknown due to the absence of national disease-specific registries and new and/or updated epidemiological data, concerns α-, β-, HbE and combined forms that are related to thalassaemia phenotypes.

About 80% of patients with thalassaemia live in low- and middle-income countries, struggling to cope with an increasing burden of the disorder year on year. In the majority of countries with medium- and high-disease prevalence, patients with the most severe type, namely β-thalassaemia, do not reach or surpass the age of 20-25 years. This is a result of belated diagnosis and suboptimal management of their condition, which could have been prevented given the existing ample knowledge, experience and best practices regarding the effective prevention, control and management of haemoglobin disorders and thalassaemia, in particular.

Despite the ever-rising global incidence of thalassaemia and in the absence or lack of effective prevention programmes, awareness and knowledge about even the basics of the condition’s prevention and management remain largely confined amongst the general public, including carriers of the disorder and/or patients themselves.

Ignorance, lack of knowledge and understanding and social misperceptions are still issues of crucial importance with regard to thalassaemia, negatively affecting people everywhere in the world.

Lack of awareness not only has a major impact on health outcomes, but it can also be divisive in society and affect quality of life.

Social stigmatization and marginalization of patients or even carriers with thalassaemia in certain cultures and countries, consequent to lack of knowledge about the disorder in terms of inheritance, prevention and care, constitute persisting challenges we must continuously tackle.

Knowledge is key to a better life

Our vision is a world where thalassaemia can be prevented, controlled and treated properly. And we believe that awareness is the first step to any kind of meaningful change. By stepping up awareness, knowledge, and education about thalassaemia we can collectively help address significant challenges, such as to:

• Improve early thalassaemia detection and control
• Advocate for access to appropriate care and treatment for patients whose health needs are not met by healthcare services
• Engage national governments to integrate thalassaemia at the heart of their health plans and implement country-specific prevention and control plans
• Challenge the stigma and discrimination, caused by lack of understanding of the condition

 

Patients must be aware of their condition and have access to accurate and reliable information about it, in order to be able to take a more active role in managing their health and interacting with healthcare professionals and decision makers at all levels.

Physicians must have a solid understanding of a complex, chronic disease like thalassaemia to detect its symptoms timely and accurately and provide safe and effective care to patients.

Governments must know and appreciate the burden of a disease to be able to invest in its prevention and control rather than deal with costly and often tragic consequences.

The community at large must be aware of a condition and its symptoms, in order to take preventative action or visit their doctor and access timely and appropriate care.