Thalassaemia is a cruel, inherited blood disorder. Patients with Beta thalassaemia major – the most severe type of thalassaemia – cannot make normal red blood cells and do not produce enough haemoglobin. This leads to severe anaemia, with consequences such as retarded growth, bone deformities and reduced levels of energy. In the absence of appropriate medical care, affected individuals die at a young age.

Medical advances in thalassaemia have changed the natural history of the disease, such that it is now both preventable and treatable – a chronic, rather than a fatal, condition. With appropriate clinical management and health care, patients with thalassaemia can lead a near-normal life as integrated, productive members of society.

The treatment of thalassaemia is lifelong, complex and costly, requiring blood transfusions, bone marrow transplants, treatment of iron overload and other difficult procedures. The majority of patients, particularly in low-resource countries like Indonesia, are children. This is because, without treatment, patients die at an early age. In addition to the struggle faced by patients coping with the disease, thalassaemia has great emotional, social and financial repercussions for families as a whole.

My wife's family in Indonesia was directly affected by thalassaemia during the 1950s and 60s, a time when no medical information was available to ordinary people, with tragic consequences. Imagine how it must feel to lose one young child after another, without any understanding of why this was happening. Yet this disorder is preventable through genetic counselling. Carriers appear healthy, but have a one in four chance of having children who are affected by the disorder, and a 50% chance of having children who are themselves carriers (diagram from Colin Burnett on Wikipedia).

In 1987 my wife's parents were founder members of the Indonesian thalassaemia charity, Yayasan Thalassaemia Indonesia. Although medical understanding came too late to help their own children, they strove to do what they could to disseminate information, promote understanding of the disorder to prevent other families suffering the same heartbreak.

Today the Yayasan Thalassaemia Indonesia continues the important work of disseminating information, providing genetic counselling to prevent the spread of the disorder, and where possible, treatment for its victims. Please give what you can to save an Indonesian family this unnecessary suffering. All your contributions will go to the Yayasan.

The above photos show blood transfusions organised by YTI. Below is an information video from the UK Thalassaemia Society:

This Indonesian documentary includes an interview with Bp. Ruswandi, also a founder member of the Yayasan Thalassaemia: