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Written By: Editorial Team | Updated : May 9, 2013 10:10 AM IST
May 8 was International Thalassemia Day.
Shimla-based public welfare trust Umang Foundation Wednesday asked the state government to include thalassemics in the category of disabled so that they could avail facilities being provided to the physically challenged. 'The government should also initiate a screening programme for the detection of thalassemic children and frame appropriate policy for them,' the trust's chairman Ajai Srivastava said on World Thalassemia Day on Wednesday He said members of the foundation met state Health Minister Kaul Singh and submitted a memorandum to him demanding facilities for thalassemic children. 'Thalassemic children also have functional disability, so they should be included in the category of disabled. In this way they should be entitled for scholarship from school to university-level,' Srivastava added.
He said that Himachal Pradesh did not have facilities for testing thalassemia and that poor parents could not afford costly medicines and faced problems during blood transfusion. 'Thalassemia patients at Indira Gandhi Medical College and Hospital in Shimla are being provided free medicines. But other government hospitals do not have such a provision. It should also be extended to other hospitals,' he said. A survey conducted by Umang Foundation at blood banks in the state shows that there are around 125 thalassemia patients in Himachal Pradesh. Srivastava said the government should conduct a survey to ascertain their exact number.
What is thalassemia?
Thalassemia Major is an inherited blood disorder in which the affected children are unable to maintain Haemoglobin (Hb) in the normal range. Their bone marrow cannot form sufficient red cells and red cell survival is also reduced.
The situation in India:
It is estimated that about 3.4% of our population is carrier of thalassemia (or suffering from minor thalassemia). Every year 7000-10,000 children with Thalassemia Major are born in India. It is more prevalent in communities like Sindhis, Punjabis, Gujaratis, Marwaris, Bengalis, Saraswats, Gaurs etc.
How is thalassemia caused?
There are two types of the disease minor and major. Thalassemia minors are people who carry one defective gene who are fine except in stressful situations in life (like some serious surgery/pregnancy) they may have low haemoglobin while major is a serious blood disorder which causes severe bouts of anaemia and related complications which is caused by the presence of two defective genes. When both parents are thalassemia minors or carriers, there is a 25% chance of birth of a thalassemia major child; 25% chance of a normal child and 50% chance of a thalassemia minor child.
There are various problems of living with thalassemia major:
Prevention of Thalassemia:Thalassemia is a preventable disorder. If one knows ones thalassemia status, one can be in touch with ones doctor for further counselling and prevent the birth of a thalassemia major child. Read more here.
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