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Kolkata|
The message was loud and clear during awareness seminar on World Thalassimia day (May 8) organized by Picnic Garden Lila Seva Society. Purely being a genetic disease, transmission of Thalassemia occurs through carriers, i.e through ones parents or ancestry. But by no means it’s the end of the world for those who have the disease. Though it’s non-curable, yet, with proper care, learning and perseverance it can very well be regulated to be practically ineffective.
But prevention is always better – and the best practice is to undergo, Haemogram, a simple blood test and if suspicion arises one can confirm the presence of carrier state via HPLC test .
As this awareness is spreading many couples are subjecting themselves to the test before marriage. “If carrier state is detected, it’s best to anull the marriage for the sake of to-be-born”, opined, Dr. Soumya Bhattacharya., eminent hematologist and head of the department of hemato-oncology, adding “If both parents are carriers the risk of having a baby with Thalassemia major is 25% in every pregnancy. Tests are available in early pregnancy (before the 12th week) to check for contraction, and if so found abortion may be decided upon”. Major phylum is detectable between 6months to a year while the intermediate one is evident only aft 7-8 years of age.
For those unfortunate ones bearing the brunt of the disease, specially, Thalassemia Major which results in deformed and reduced formation of red blood cells, there were brave faces of a 3yer-old, a 40-year old, a 36-year old and Avisruti – a 17 year old HS-appeared girl – all of whom have not only conquered the odds but lead a reasonably normal life, albeit strict remedial-regimentation. The affected needs to be supported with lifelong blood transfusions and management of complications of such multiple blood transfusions, the most important being control of iron-overload. Modern treatment and technique of blood transfusion are more effective than before. Besides treatment, counseling is also needed.
Bone marrow transplantation is the only cure and even in then option is limited to families who have other unaffected children and have complete match on HLA testing.
Bone marrow transplantation is the only cure and even in then option is limited to families who have other unaffected children and have complete match on HLA testing.
Government assistance is available through almost free-diagnosis at NRS and further relevant gubernatorial support is about to roll out in the districts as well.
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