Gen Y Speaks: Why I want to raise awareness on Singapore’s most common genetic condition

Growing up as an avid member of the The Boys’ Brigade, my younger brother, Neilsen, was physically active and never had any fitness or health issues.

However, at age 16, he began to develop symptoms of anaemia, such as easy fatigue and shortness of breath during exercise.

Our concerned mother took him for a blood test, which revealed that he has thalassaemia minor.

This is the mild form of thalassaemia — a genetic blood disorder caused by changes in the genes which affects the production of haemoglobin, the protein in red blood cells responsible for oxygen transportation in the blood.

Typically, individuals with thalassaemia cannot produce normal haemoglobin. This results in anaemia, a deficiency of healthy red blood cells.

The doctor said that as my brother’s thalassaemia was mild, he might only experience mild anaemia. As long as he did not overexert himself, he would not require any treatment and could go about his day-to-day activities like any healthy person.

Those words were very reassuring. And when my younger brother managed to complete his Basic Military Training during National Service without any health scares, our family became even more convinced that the condition would not affect his life in any significant way.

Fast forward two years later to 2019.

As my schoolmates and I were doing research for our final-year project in university, I stumbled across an article titled “Five health conditions Singaporeans are especially at risk of having” on HealthXchange, a health and lifestyle resource portal by SingHealth.

I noticed that thalassaemia was on the list.

More shockingly, I learnt from the article that thalassaemia is the most common genetic condition in Singapore, with about 5 per cent of the population, or 1 in 20 Singaporeans, estimated to have thalassaemia minor.

The article added that when a couple both have the condition, there is a risk that their future children may develop the severe form of the disorder — thalassaemia major.

Upon further research, I learnt that there is a 25 per cent chance that this will happen and those with thalassaemia major suffer from severe, life-threatening anaemia, which may result in poor growth and a shortened lifespan if left untreated.

As the only available cure at present is a bone marrow or stem cell transplant — a high-risk procedure that also involves the difficult process of finding a donor — most individuals opt for treatment instead.

This involves life-long regular blood transfusions and taking medications.

It was at this point that I realised that my brother’s condition was in fact something my family should be worried about. If he were to marry someone who also has thalassaemia minor, there is a chance that their children may develop thalassaemia major.

However, my concern extended beyond my brother to my fellow Singaporeans as well.

Despite the mild form of the disorder being fairly prevalent, because of the lack of symptoms and the absence of treatment required, many Singaporeans may actually have thalassaemia minor without knowing it.

They may thus be at risk of unknowingly having children with thalassaemia major.

The author (right) with his brother Neilsen.   Photo courtesy of Jensen Chan 

When I found that there had been no large-scale public communications campaigns in Singapore to raise awareness about the disorder and to promote thalassaemia screening — the only way to identify if one has thalassaemia minor — I felt I had to do something about it.

So I decided to take this on as my university final-year project and persuaded my groupmates about the value and importance of this cause.

Prior to designing our campaign, we conducted a survey of 201 individuals aged 25 to 34 who are in a relationship and intend to have children to find out what they knew about thalassaemia and if they had gone for screening.

Tellingly, 89.6 per cent of the respondents have not gone for thalassaemia screening and remain unaware of their thalassaemia status while 71.6 per cent had never even heard of thalassaemia before, further highlighting the need for our campaign.

The most interesting response we received came from a female interviewee who asked: “Thala…simi ah? (‘what is that’ in Hokkien)”.

Realising that it perfectly summed up the general response of those surveyed, we decided to title our campaign “Thala-SIMI-AH?”.

This at once teaches our target audience how to pronounce the foreign-looking word, ‘thalassaemia’, while playing on the Hokkien phrase “simi ah?” to relate to their lack of knowledge about the disorder and to encourage them to find out more about it.

The campaign uses social media and a series of roadshows to engage young couples about thalassaemia, the availability and importance of screening, and what they can do should they be diagnosed as having thalassaemia minor.

The campaign is in collaboration with KK Women’s and Children’s Hospital and the National Thalassaemia Registry, which have lent their expertise to review the content of our campaign’s collaterals and will be providing and arranging thalassaemia screening for eligible roadshow participants.

At a series of roadshows at Chatuchak Night Market Singapore in February, we managed to speak to over 500 Singaporeans and educate them about the disorder.

A vast majority of the young couples who chanced upon our booth had never heard of the condition and expressed shock at how common it is and the serious implications it might have on their future family planning intentions.

Over 150 signed up for thalassaemia screening, far exceeding our target of 100 sign-ups.

It was also heartening to see numerous individuals with thalassaemia minor stop by our booth to commend our campaign.

Most encouraging of all, however, is the support I have received from my friends, in helping to spread the word on our campaign, as well as from my family, especially Neilsen himself.

As the first ever student-led thalassaemia awareness campaign in Singapore, we hope to build on existing initiatives to work towards establishing thalassaemia screening as part of the family planning process for all Singaporean couples so that they may make more informed family planning decisions.

As our campaign slogan goes: “Ignorance isn’t bliss when your future child is at risk”.

ABOUT THE AUTHOR:

Jensen Chan is a final-year student at the Wee Kim Wee School of Communication and Information, Nanyang Technological University.