Care at hand for thalassemia patients

Publication

BANGALORE: "Though he is 21, he looks like a school boy. His growth is curtailed. There's no puberty-related growth. Some testosterone injections may help," said Dr Mamta V Manglani, an expert on thalassemia from Sion Hospital, Mumbai, looking at Kishore Kumar, a youth who had to discontinue his studies due to the disorder.

Doctors also advised Mookambika to make her two kids with the same disorder play more. "Otherwise they will develop bone-related problems," she was told. The doctor was referring to victims of Thalassemia, a disorder related to weakening and destruction of blood cells.

The venue was the inauguration of Samraksha, a free day care centre for thalassemia patients, in Chamarajpet. The disorder leads to weakening and destruction of blood cells.

Mamta said blood transfusion was not the only treatment for the disorder and that it involves a comprehensive process. She also called upon parents of such children to educate themselves about the disorder.

Shoba Tuli, parent of a thalassemia-affected child and vice-president, Thalassemia International Federation, said parents play a key role when it comes to providing care and treatment and that they should not feel discouraged. "It's like any other disease. Don't give up. Otherwise, your children will not grow up," she said. The government should ensure free treatment to such patients, she added.

Shoba further said soon a discussion will be held with 62 thalassemia associations across the country to evolve new guidelines with regards to care or treatment of such patients.

The centre set up by Rashtrothana Parishat in association with Sankalp, an NGO, can at present accommodate six patients. Soon it'll get a new facility on a land given by BBMP, wherein 200 such patients can be treated

WHAT'S Thalassemia

Thalassemia is a blood disorder. The disease is caused by weakening and destruction of blood cells. It's caused by variant or missing genes, severely affecting the making of haemoglobin protein, an essential ingredient which helps red blood cells carry oxygen. The disease causes several complications like iron overload, bone deformities and also cardiovascular illness and enlarged spleen. An estimated 800-1,000 children in Karnataka are born with this disease.

The patient needs life-long medication.