Horrible? Yes.
It is estimated that 7% of the world's population carries the thal gene. In Maldives it is 18%. In Thailand it is estimated at about 30%!!! There are somewhere in the neighborhood of 40 million thal carriers in India! The idea that thal is not a big enough problem to warrant the research into treatment and cures, is ridiculous. In many countries that are now modernizing, patients are now living instead of dying at an early age because they are now getting at least some basic care. I think we are on the verge of discovering the full scope of the thalassemia problem in the world. It has the potential to become a huge international health issue because the current cost of thal care is greatly taxing health care systems and estimates are that we will be seeing a major increase in reported cases in the coming years. It is estimated that the vast majority of children born with thal major die undiagnosed at an early age. The figures are not known as WHO does not estimate the number of cases or deaths annually from hemoglobin disorders. However some estimates have been made with the understanding that the totals may be far lower than reality. Since most cases are found in poor underdeveloped areas, the true scope of the problem cannot be accurately estimated.
From
http://www.dcp2.org/pubs/DCP/34/Section/10774For severe Beta thalassemia, figure 34.2 suggests 43,100 births per year, nearly all in low- and middle-income countries, where affected babies are likely to die before reaching two years of age. At least 41,500 deaths probably occur each year...This estimate may be too low, because it does not include the estimated 20,000 births per year in China...Thus, the severe Beta thalassemias probably account for 50,000 to 100,000 deaths per year.
This is staggering! And most likely an underestimate. Thalassemia is not a minor issue and we only do ourselves a great disservice when we accept without question, the notion that thal isn't big enough to get the attention it needs. A large part of the reason for this perception of thal as a minor problem is that so many cases occur in poor areas where they are not diagnosed and care is non-existent. Out of sight, out of mind should not be the deciding factor on whether or not thal gets the research and health care funding required. Thal may have been a problem predominant in poor areas of the world but with development and emigration, thal is rapidly becoming a problem in western countries, so maybe awareness and attention will increase in the coming years. Part of the purpose of this group is to educate and raise awareness about thalassemia and I hope every member does their best to educate others about thalassemia when the opportunity appears.