Education and awareness are keys to unlock progress

WHEN In Your Face kicked off last October, one of the aims of this column was to highlight initiatives kicked off by those who were rolling up their sleeves to address the different problems we face head on.

It's no different this time, as I'm highlighting a campaign started by The Students Voice TCSJ - a publication run by a group of pre-university students at Taylors College Subang Jaya.

The Students Voice kicked off a campaign in late September to raise awareness about the three forms of a genetic disorder called Neurofibromatosis (NF) - NF1, NF2 and Schwannamatosis, and this intrigued me because it's not every day one sees college students tackle issues as complex as this.

How complex is it? Let me use NF2 and NF1 as examples.

NF2 is an incurable genetic condition which causes non-cancerous tumours to grow anywhere in the brain, along the spinal cord and central nervous system which affects one in every 33,000 people worldwide.

This means that for someone living with NF2, their brain, spine and nerves are filled with an assortment of growths. These tumours can cause deafness, blindness or paralysis – or all of the above in the case of NF2.

NF1, which is in many ways similar to NF2, affects more people. This genetic disorder affects one in every 2,500 people worldwide and the tumours in those living with NF1 can cause skeletal deformities as well as neurological challenges due to tumours compressing nerves or visual challenges when they grow in the optic nerve.

That said, it is clear that NF in its various forms is a complex and nuanced genetic disorder. However, I have learned that it is one that many doctors will not encounter in their career. So I spoke to The Student Voice's managing director, Ung Lik Teng to find out why he called for the campaign.

Ung said he first heard of NF at the Hear Us Out 14 Global Issues Conference in April this year.

"I found out that NF is a pretty common disorder. However, little attention is given to it by the Government and medical practitioners, at least in Malaysia. And hence minimal support is given to NFers and they have to bear heavy medical costs," said Ung.

The A-Levels student added that one of the key aims of the campaign – which included an awareness carnival called the Frozen In Time Carnival – was to educate his fellow students

"I think it's good and wise to start educating the student community, which is within our ability. So when more awareness is generated, more attention will be given to NFers in the future. Many Taylors College students want to become doctors," said Ung.

He added that while there wasn't much that The Student Voice could do to influence Government policy, students today would be leaders in the future.

"We think we can start small and make an impact in the long run, as the students today will be the leaders in the future," said Ung.

He said that in learning about NF and NFers, he came to see NF survivors as exceedingly strong men and women.

"I actually think that all NFers must be either ironmen or iron ladies, having survived so many surgeries. Pain is inevitable, but misery is not. It's really empowering to see NFers choose to fight hard and survive," said Ung.

And Ung isn't wrong about that observation, as his comment reminded me of a quote from Keisha Petrus, a Malaysian poet who passed away in 2014 due to NF2-linked tumours. 

Petrus had said in a 2012 essay; "I have allowed my condition to provide me opportunities to broaden my horizons, challenge my faith and test my character. So instead of wallowing in self-pity, I embrace adversity to bring out the best in me and overcome the obstacles in my life."

Returning to the awareness campaign run by The Student Voice, I spoke to Ung about the Frozen In Time Carnival, and he said the response from students was overwhelmingly positive as over 300 students turned up to support it.

"The crowd was unexpectedly huge. We had a flash-mob session where 60 volunteers froze in place on the ground for 10 minutes while holding placards. Students would 'unfreeze' the volunteers by citing the quote on the placard and take a photo with them before redeeming a free Chatime drink," said Ung.

He also explained the significance of the flash-mob, saying that the freezing-in-place was to symbolise the paralysis faced by some NFers.

Similar views were shared by another A-Levels student and The Student Voice's deputy editor-in-chief Tan Lian May, who said she was very interested in the idea when Ung proposed it.

"I had never heard of NF before this. I did my research and supported him fully. What surprised me was that NF is such a common genetic disorder, but so few people are aware of it," said Tan.

She hoped that her fellow students would one day contribute to help NFers.

Another A-Levels student, The Student Voice's publishing director Monica Prissha Fernandez also said she was interested in learning more about NF when Ung tabled it at a committee meeting.

"One of our aims is to raise awareness about important issues. So when Ung raised it in a meeting, we were quite interested about this disorder as it is something that people are not quite aware of," said Fernandez.

She added that it was important to let college students know about NF because college students are learning every day, adding that she had never heard about it before Ung brought it up.

"It is something very good for students to learn about, because NF is like cancer in some ways. It is a disorder without a cure, but people don't really pay attention to it. I believe if college students learn about it now, they can do something about it when they go out into the working world," said Fernandez.

And indeed, Fernandez's comments reminded me of something that a University of Virginia neurosurgeon and NF researcher, Dr Ashok Asthagiri, shared with me about how generating support for research into treatments for NF can benefit the public at large, using NF2 as an example.

In an email to me, Dr Asthagiri said this was because the tumours that patients with NF2 develop – schwannomas, meningiomas and ependymomas also manifest among non-NF2 patients, accounting for 45% of all primary brain and spinal cord tumours that can affect anyone.

"Gaining a better understanding of how these tumours develop, what triggers them to grow and better treatments for these types of tumours in patients with NF2 will lead to a more widespread, more general benefit to everyone," said Dr Asthagiri.

All said and done, hats off to The Student Voice TCSJ for taking up a complex and nuanced challenge. With all the students going into medicine these days, here's hoping that their efforts will bear positive fruit.

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