Hyderabad: Shortage of fresh blood is a severe problem for thalassemia patients as there is always a dearth of donors in the city. On May 8, World Thalassemia Day, the problem faced by patients, especially children, is brought to the fore.
Children who undergo transfusions every two to three weeks depend on blood, which must be fresh and not stored. Due to this reason, they are dependent on donors. There are 2,000 registered thalassemia patients in the city. Everyday, 40 to 60 children come for transfusion to the Thalassemia and Sickle Cell Society of Hyderabad.
However, Ratnavali Kottapalli, founder of the society, says, “We are able to cater to only 20 children every day. Every summer there is a major shortage of donors and it becomes very difficult to provide blood to patients.”
Dr Guru Prasad, who caters to a lot of thalassemia patients explained, “These children must be given blood on time otherwise they will become weak, dull and inactive. For this reason, the parents need to have donors in hand. The concept of 20 to 25 people adopting one thalassemic child is being advocated as it would make it easy for the child to survive. Otherwise every time the parent has to hunt for donors and depend on friends and relatives who may not be able to give blood all the time.”
Apart from this, there are problems of infections and rejection of the blood. Hematologist Dr P. Kailash said, “One has to also look into the issues of blood-based reactions in these children. As they are very sensitive, they react differently to the blood of different donors. A particular set of donors that suit them can help avoid these problems.”
While those who are born with the disease are being catered to with great difficulty, Mr Kottapalli says, “Our goal is to prevent thalassemia major in children. Hence testing is very important before marriage. In my family, we found 17 carriers of thalassemia major. Prevention is important and we are asking couples to get tested.”
Despite the awareness programmes, India still has 15,000 children born every year with thalassemia. The major reason is consanguineous marriages within high risk groups, which are not tested on time.
Pre-natal testing and genetic testing is being carried out and when the results are negative, the decision to terminate the pregnancy is not accepted by many, state experts.
