NTU group spreads awareness about thalassaemia
One man needs three packs of blood every month. He has thalassaemia major, a genetic blood disorder couples wanting children need to know
He has taken a day off every month in the last 25 years for three units of blood to be be transfused into his body - a process that takes seven hours.
Mr Jack Goh, 32, has thalassaemia major, an inherited blood condition that causes fatigue and restlessness due to low haemoglobin levels limiting oxygen flow in the body.
The private-hire driver told The New Paper: "I try not to remember the fact I live with this condition. There is nothing I can do. No one wants this but since I have it, it is about choosing to think positively and not worry too much."
According to the National Thalassaemia Registry, this genetic disorder can be passed down by both parents who are thalassaemia carriers to their child, who has a 25 per cent chance of developing thalassaemia major.
This estimation means that nearly 5 per cent of Singaporeans are carriers of the abnormal gene, the most prevalent blood disorder here.
But many have not been screened and remain unaware of the potential risks.
A group of students at Nanyang Technological University's Wee Kim Wee School of Communication and Information is exploring this issue in their final-year project, called Thala-SIMI-AH?
The title plays on the Hokkien word for "what" to address the lack of awareness. The group's poll of 201 people shows 72 per cent do not know about the condition.
Mr Goh is helping the group by providing insight into thalassaemia.
The campaigners hope to encourage couples planning to have children to go for thalassaemia screening to understand the risks and probability of their child having the condition, and the options available to them.
In collaboration with KK Women's and Children's Hospital, the Thala-SIMI-AH? team is collecting sign-ups for Thalassaemia screening at a booth at Chatuchak Night Market at Turf Club this Friday and Saturday.
Team leader Jensen Chan said the inspiration for the project came from realising his brother is a thalassaemia carrier.
Mr Chan, 24, said: "For the longest time, it did not worry me as it did not seem to affect his health. But when I discovered the risks, I was shocked at the huge discrepancy between how common it is and how few people actually know about it."
Mr Goh said: "People know about cancer, diabetes, but not much about this.
"They need to know if they need to take extra precaution when they want to start a family."
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