As with any chronic illness, patients with thalassemia major face considerable challenges.
Infant Thalassemia A thalassemia major child feels the pain and discomfort due to the treatment but has no clue of his condition. At this stage the child develops confidence in whoever takes care of him/her. It is crucial for the parents to establish a bond with the child including helping him throughout the treatment. They will also need to curb their over protective instincts.
It’s also important for parents to provide a sense of confidence, in order to avoid a negative effect on a young patient’s mental well being.
This is perhaps the most difficult time. When young people are particularly vulnerable as they go through the difficult transition from youth to adulthood. At this time ,the prospect of a lifetime spent managing thalassemia becomes most stark. It is also at this time that the patient recognizes that he/she has the power to control his/her quality of life.
Doctors also use the examples of happy, healthy and older patients who comply with treatments, in an effort to encourage and support teenage patients.
A new set of challenges arise that a thalassemia major patients comes to terms with at the helm of adulthood. Despite a clear vision of his condition and the confidence to deal with it ,there are lifestyle and career decisions due to be made. Additional strains also arise if he or she is unable to become a father or a mother. Mortality continues to be a major source of distress . This arises due to knowledge on the medical complications of the disease and fear of life longevity.
Most of the countries affected with thalassemia are in the developing world. This is mainly due to poor health infrastructure and limited resources.
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