Remembering those with Thalassaemia

Thalassaemia is a genetic disorder that we have become quite familiar with over the recent years. With about 1,700 cases in the country, the hereditary blood disorder needs to be contained. What’s more is that there’s no absolute cure for those suffering from the disorder as the genetic make-up of a patient is such that the body produces less healthy red blood cells and a reduced amount of haemoglobin, which as a result deprives the body’s vital organs of oxygen.

Helping to improve the lives of those with the genetic disorder here in Sri Lanka, the Rotaract Club of Kandy has partnered with the Thalassaemia National Centre in Kurunegala since 2003.

The project back then was an annual day outing, in which the children were taken to the Peradeniya Botanical Gardens, the Temple of the Tooth, the Dehiwela Zoo or to a beach. “However, in 2009 we decided to take it to the next level,” says Rotaract Director of International Understanding, Dimuthu de Silva adding,” we discovered that these children were very talented. We gave them all sorts of creative material and their artwork drew in a huge crowd of about 1,500 to 1,600 people for the exhibition, Painted Dreams. ”

This year, the Rotaract Club of Kandy, organised a concert on May 8 - International Thalassaemia Day, to spread awareness about the hereditary disorder. Gathering at the Kandy City Centre, the children displayed their amazing talents as they sang, danced and performed skits, describes Dimuthu. “We wanted a paradigm shift this time,” he says, explaining how the children are talented in so many ways that the club wanted to give them the opportunity to show others what they are capable of as well as providing them with the opportunity to shine.

The President of the Rotaract Club of Kandy, Dileepa Peiris, said “Previously, the patients would only survive up to the ages of 12 or 13. But now there are patients who have survived up to the ages of 25 and 26. But it’s not over yet because it’s a hereditary disorder.

Dileepa explained that in 2007 and 2008, the Rotaract Club of Kandy was able to raise enough funds to purchase Iron Extraction Pumps from Italy which was a long needed necessity for the treatment of the patients.

Medical Officer in charge at the National Thalassaemia Centre teaching hospital in Kurunegala, Dr. Ashok Perera, explains that those who suffer from the condition are normal in every other respect. “They have a normal IQ. They have the same physical and mental development as those of the same age who don’t suffer from the condition,” he explains.

"The areas in which Thalassaemia is most prevalent are the North Western Province, North Central and Uva Provinces, with a few reported cases in the Central and Western Provinces," he said. There are currently 850 registered patients at the hospital with 650 to 700 patients who come independently for regular treatment. Having carried out several screenings and awareness programmes for students, teachers, religious leaders, villagers and many more, the National Thalassaemia Centre has been vigorously trying to control the genetic disorder in the country. Since May 13, they have ventured into Ibbagamuwa which is where Thalassaemia is most prevalent in the island.

Those who wish to help are welcome to make a donation to the Thalassaemia Prevention Fund, Kurunegala Hospital Branch, People's Bank, account number: 012200140007613.

For more information contact The National Thalassaemia Centre at the Kurunegala Teaching Centre on 0372222261/262 or visit the website of the Rotaract Club of Kandy www.rotaractclubofkandy.org

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