While medical facilities for thalassaemic children have improved, teenage patients have different problems. These include problems related to puberty (or the absence of it in some patients), growth deficiency and psychological problems such as low self-esteem.
Last January, Sangeeta Wadhwa, 34, and Pankaj Sethi, 25, (both thalassaemia patients) started the Youth Thalassaemic Alliance (YTA) to deal with the problems faced by thalassaemic youth. "YTA was established in the memory of my sister, Payal, 27, who died in August 2010. She was a thalassaemia major patient and died of a heart attack because of an iron overload in the heart. I felt that if this could happen to my sister, who got the best treatment, then what about patients who do not have the resources," said Wadhwa, a Vashi resident.
The group has organised three seminars about thalassaemia treatment, psychological issues and endocrine problems related to growth and puberty.
Wadhwa said that many patients are pampered by their parents. "Many youngsters have not even completed their education. I know of a college student, who calls up his parents while taking transfusion and asks them to get him a gift or else he will not undergo transfusion," said Wadhwa.
Besides, most non-profits working for thalassaemia have been started by parents. "We felt that patients should be involved as they understand their situation the best. We want patients to be more responsible for their lives. We want them to do what normal people do," said Sethi, who was Payal's friend.
"We see a lot of children who have not attained puberty because of iron overload in the pituitary glands. Some parents of girls, who have not got periods even up to 18 years, have a misconception that they should not bleed as they anyway lack blood in their body. We try to explain to them that thalassaemia is not a bleeding disease and hormones released after puberty such as estrogen is good for the heart and development of the girl," said Dr Sudha Rao, professor of pediatric endochrinology, Wadia Hospital, Parel Many children lack the growth hormone or testestorone and need regular shots. Patients could also have diabetes, calcium deficiency and weak bones. "I have had to convince many parents just to take their children to a doctor,” said Wadhwa.