Last year, when Manjula Bhanushali, 24, revealed her thalassaemia major status to a firm she wanted to join, she was asked to sign a document stating the company would not be responsible for any serious medical emergency during work hours.
“I signed it. I preferred being transparent and people have dealt with me positively,” said Bhanushali, who is part of the Youth Thalaessemic Alliance (YTA) formed last year in the city.
YTA organised a seminar at Sion Hospital on Saturday to discuss the issues of stigma, psychological problems, aspects of treatment and growth problems related to the disorder, which results in excessive destruction of red blood cells causing anaemia.
Around 150 patients and their parents attended the seminar. Better availability of blood and an increase in the number of transfusion centers has led to a higher life expectancy of thalassaemia patients.
Doctors advised parents to not be overly protective. “I know of patients aged 20-21 who are not allowed to go out to nearby markets. Many parents stop their child’s education,” said Pankaj Sethi, co-founder of YTA.
“Most thalassaemia patients would live up to the age of 25 to 30 years. Improved facilities will help them live up to the age of 60,” said Dr Mamata Manglani, head of pediatrics, Sion hospital.
“There are a large number of patients who now hold jobs and are open about their disorder,” said Vinay Shetty, founder of Think Foundation that works for thalassaemia patients.
With increased life expectancy, thalassaemic youth are facing issues related to growth and development of secondary sexual features. Many patients have to take testosterone and growth hormone injections.