As many as 760 thalassemia patients are registered at the thalassemia centre being run by Fatimid Foundation. It was learnt here Friday on World Thalassemia Day.
In this connection when this scribe contacted a senior doctor working at the Children Hospital, Chandka Medical College Hospital, Larkana, he said on condition of not disclosing his identity for fear of repercussions that thalassemia is not a curable disease but can be controlled. He said that thalassemia major and minor are major variants of the disease. He said when both father & mother are affected as minor then baby born may have Thalassemia major. If one parent is minor then 25% baby may be minor, he said. In 2013, he said Sindh assembly passed resolution that every couple must be tested for Thalassemia before marriage for which government: is bound to provide test at every district level & working Thalassemia Centres but this law is yet to be properly implemented like other laws.
He said that it is a pity that government has gifted almost all thalassemia centres of Sindh to different NGOs on the SOPs that they will provide treatment free of coast to thalassemia patients as affected children need blood and treatment but not a single centre provided blood or other supportive drugs to them neither performing necessary routine investigations, he added.
Every new patient has to conform test (HB Electrophoresis, Serum Feretin level, CBC) at his/her own cost then he/she is registered at the relevant centre. Thalassemia patients have to provide substitute blood to the centre then they are transfused blood of their requirement.
