Several awareness programmes have been organised in the city to mark World Thalassaemia Day on May 8.
Dr Nita Munshi,president,Thalassaemia Society of Pune,said thalassemia major is a genetic disorder inherited from both parents. Children with this condition are born with it as both parents are carriers, she said.
It is estimated that nearly one lakh Indians suffer from this disease,with over 8,000 thalassaemic births being recorded every year. Thalassaemia is a blood disorder where the patient has to undergo repeated transfusions as the body cannot produce enough haemoglobin. While the society has around 100 members who have thalassaemia,in Pune,there are nearly 350 people suffering from the disease,Munshi said.
An awareness programme will be held at Poona Club on Tuesday where several persons who have helped the society will be felicitated. Talks by experts have also been organised on the occasion. The Thalassaemia Society of Pune,formed in 1991,takes several initiatives to help thalassaemic children and their families. Blood donation camps are organised regularly. It is essential to screen students and pregnant women for thalassaemia. However,if two thalassaemia carriers marry,then they have a 25 per cent chance of having a child with thalassaemia major.
Dr Vijay Ramanan,founder director of Bone Marrow and Central Transplant at Ruby Hall Clinic,said apart from the psychological and emotional trauma,thalassaemia also poses a huge financial burden on the family. The cost of chelation to remove excessive iron and blood transfusions is close to Rs 10,000-15,000 per month. However,now two hospitals are providing treatment in the form of bone marrow transplant. Till date,32 thalassaemics have benefited from the treatment.