The decision whether to undergo BMT might be a difficult one for many families and patients. As a general rule most children born with thalassemia who have regular access to appropriate supportive care may have a long and productive life. However, even if chelation therapy has taken major steps forward and can potentially lead to negative iron balance (that is to remove more iron than that supplied by transfusions), some important complications of thalassemia which are not necessarily related to iron overload, might still be a problem. In a country like India appropriate care may not always be affordable and/or accessible on a long term basis, and most individuals with thalassemia still do not reach adulthood. Lastly, health-related quality of life (HRQoL) is often an issue as well as being able to marry and bear children. Unfortunately, we don’t really know the true frequency of deaths related to thalassemia or the real impact of this disorder on the quality of life of individuals with severe thalassemia living in India. The issue is further compounded by major inequalities in access to health care so that thalassemia has very different severity depending on family socio-economic background or geographical location.
These answers have been prepared by:
- Dr. Lawrence Faulkner, Cure2Children medical team coordinator
- Dr. Sadaf Khalid, Cure2Children Pakistan branch coordinator