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Gen Z Speaks: I believe a bleed-free future can be a reality for people like me who live with haemophilia

“Each time the phone rings, my heart will skip a beat,” I recall my mother saying when I was young.

“Each time the phone rings, my heart will skip a beat,” I recall my mother saying when I was young.

When I was about six months old, I developed an unusually large bruise on my chest. My parents took me to a community traditional Chinese medicine practitioner who advised them to immediately take me to the KK Women's and Children's Hospital (KKH).

After several tests at the hospital, I was diagnosed with haemophilia A, an inherited bleeding disorder. 

Those living with haemophilia lack clotting factors to form blood clots, which means that without timely medical attention, it may be life-threatening.

This diagnosis has been life-changing, not just for me, but for my whole family.

Worried about not having enough money to pay for medication, my father sold the family car. 

He also changed his job from an electrical technician to a taxi driver so as to have the flexibility and a mode of transport to rush me to the hospital whenever I needed medical attention.

To supplement the family’s income, my homemaker mother took to distributing flyers occasionally.

Every three to five days, my parents would have to take me to an outpatient clinic for infusion. Each visit could take between two to four hours. 

When an injury happened outside of office hours, I would have to be rushed to the emergency ward where there might not be a specialist who would be able to set up the infusion procedure. 

I recalled once being admitted at 7pm and only leaving the emergency department at 6am the following day.

My parents were apprehensive when expecting their second child, and only decided to go ahead with the pregnancy as tests indicated a negligible chance that this child will also have the same inherited bleeding disorder.

GROWING UP WITH HAEMOPHILIA

Living with haemophilia meant being familiar with unexpected bleeding that can occur randomly. 

Within an hour, the swelling around the joints can be so painful that I would no longer be able to walk.

In both primary and secondary school, my class was assigned a classroom on the ground floor so I did not have to navigate flights of stairs when I came to school on crutches or in a wheelchair, which was quite often.

My early years were sheltered. My mother did not leave me out of sight, and the flooring of the flat was padded with soft mats to cushion any fall. 

At most, we would take short walks in the neighbourhood and return straight home.

I was a sporty young child with lots of pent-up energy but cautious teachers did not allow me to participate in any physical or sporting activities during my primary school years. 

My only outlet then was when my parents would take me to the neighbourhood basketball court where I would be allowed to dribble and shoot a few hoops.

Other than physical activities, I was also not included in other school events, sometimes without due consultation. I grew up feeling discriminated against, left out and alone.

Despite my parents’ consent, I was the only one from the class excluded from the National Day Parade (NDP) celebrations, as my primary school teachers thought there were too many steps to climb at the Marina Bay floating platform.

I recall how I was not offered the opportunity to take part in an overseas business trip while I was in polytechnic, and I did not know the reasons for it. I gave feedback to the school authorities, but to date I still have no idea why I was excluded.

CONTRIBUTING TO THE COMMUNITY

In spite of focusing on the limitations due to my condition, I was determined to explore how I can be a contributing member of society.

During my time at a polytechnic, I would volunteer as a befriender to children who are sick or from disadvantaged families.

Fortunately, I had a second chance to volunteer for the NDP, which is my way to contribute to this quintessential event celebrating Singapore.

Perhaps more importantly, it was able to reconcile my feelings of being discriminated against nearly a decade ago, after my school left me out of the celebrations.

These opportunities gave me the chance to step out of my sheltered cocoon, and I relish connecting with people from different walks of life.

The best years of my life were serving in the National Service. My supervisors were very supportive and gave me opportunities to take on leadership roles.

Living with haemophilia has inspired me to be a healthcare professional to explore better and alternative treatments so that others living with health conditions can have a better quality of life and thrive. 

I studied pharmacy science and have served nearly two years as a pharmacy technician at a restructured hospital.

MY TREATMENT JOURNEY

There are two approaches to treating haemophilia. Replacement therapy is used prophylactically (taken at regular junctures) to prevent dangerous bleeds, and importantly, preserve the health and function of joints. 

Together with appropriate training and the use of protective equipment, people living with haemophilia can lead physically active lives and participate in a number of sports even at the competitive level. 

The more affordable alternative is to seek treatment as and when needed.

Due to cost considerations, my parents had to take the difficult decision to decide against using prophylactic treatment. 

So long as there is some bleeding, I will have to be sent to the hospital to receive treatment. It would require three to five treatments to truly end the bleeding. The expenses can be much higher if it is a major injury.

During my NS enlistment, I had access to medical coverage which supported the costs of treatment. My doctor advised me to leverage the coverage to switch to a newer treatment which is currently not on the list of subsidised drugs. 

In those three years, there were zero bleeding episodes, which empowered me to embrace life fully.

But now that I have completed my NS, I no longer have access to the comprehensive medical scheme. 

I have to give up on that treatment and revert to my former treatment regime which is on the list of subsidised drugs. Eight months later, a major bleeding episode occurred.

I am currently using the subsidised medication. Coupled with partial charitable funding from the hospital and the Haemophilia Society of Singapore, I still have to put aside half my salary for treatment each month. 

Excessive bleeding in the joints and muscles can lead to longer-term consequences. Now, at 25, I have already developed arthritis, which is excruciatingly painful with each flare-up.

It is hard to imagine a future like this, but I have to make the best of my condition because this is what I was born with.

The reality is that people living with haemophilia can lead fulfilling and meaningful lives, and contribute like anybody else towards the community.

We need access to treatment for this rare disease so that it is not dependent on one’s ability to pay but based on one’s medical needs. 

Those around us can lend support by seeking to understand the disease and be inclusive. 

Educators could set an example of inclusivity. Instead of restricting students with haemophilia from regular activities, they could include less impactful sports such as swimming or frisbee and focus on involving students living with chronic health conditions.

By penning my thoughts here, I wish to invite the community to unleash the untapped potential of those of us living with haemophilia, by jointly envisaging and achieving a bleed-free future for all. 

Those after me do not need to live with chronic joint pain and longer-term consequences such as arthritis.

ABOUT THE AUTHOR:

Benjamin Tang, 25, is a pharmacy technician at a public hospital. He is diagnosed with haemophilia A, an inherited bleeding disorder in which the body lacks clotting factors to form blood clots.

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Health inclusivity disease volunteering

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