Liyana
Modest Style Blogger
Maximalist at heart, minimalist by experiment
Disniac + Colour chaser

What Is Hemophilia? Growing Up Around It + How You Can Help The Hemophilia Society of Malaysia

Have you heard of the name "Hemophilia"? It's OK if you haven't because truthfully, there's a big chance I wouldn't have either if I didn't grow up around it.

So:

What Is Hemophilia?

Hemophilia (or Haemophilia) is a hereditary bleeding disorder in which there's not enough clotting factor in the blood that controls bleeding, which affects males more than females and cannot be cured. People with the disorder bleed longer than anyone else normally would, which could lead to excessive bleeding even in minor injuries. Those with a severe form of the disorder suffer from frequent painful bleeding into their muscle or joints. The concern is not bleed from small cuts, but from deep inside the body which could be life-threatening.

In other words: people with ALL clotting factors in their blood, like you and me, can bounce back from non-lethal injuries more or less as expected with a whole lot less worry.
A true blessing we probably take for granted, which is something to think about and be extremely thankful for.

Hazri, Hisham & my Dad during a Hemophilia youth program last year in Sabah

Growing Up With Siblings With Hemophilia


Note: I will tell you my story here because my brothers' stories are not for me to tell. But in this same post later, I will share with you one of my brothers' account on living with the disorder, and what I want to ask from you, my dear reader.

PS: Feel free to skip my account below and head directly to this Kitafund page to find out how you can help!

•     •     •     •     •     •     •

I make up one of five siblings in my family. Having two sisters and two brothers have made my life entertaining; we had so much fun growing up and until today, we've remained as close as always.
Us 5 siblings with our parents

My childhood was centred around the fact that I was a middle child growing up in between two boys with Hemophilia. As a little girl, I was always aware of how my parents needed to take extra care of my brothers — both of which are close in age to me — which means I got less of my dad and mom's attention. Not that it ever bothered me; even with lesser attention on me, my parents filled my childhood with all the love and care I needed.
Plus, at that age, I was too consumed in my own little world anyway! Knowing what I do now, I am truly appreciative of how fairly my parents catered to each of us.

My handsome brothers, Hazri & Hisham
I became more self-aware about my brothers' Hisham and Hazri's condition when I was in my last years at primary school with both of them in classes not far from me. They had to miss more days of school than what was normal for me, and had to sit out activities that most kids wouldn't bat an eyelid about.

Not that they cared about being entirely careful, though! Contact sports are discouraged for Persons with Hemophilia (PWH) but did that stop my brothers from playing football? NOPE. My younger brother Hazri was pretty much a rascal (and still is), who did not hesitate to abandon all his senses just to have a good time with his friends.

PS: Beckham's football, that is, or soccer, to some parts of the world.

I remember this one day when our school had some sort of fun day out on the field when Hazri ended up hurting one of his legs; it bruised and swelled so badly he couldn't get up off the ground. Thankfully my favourite teacher, who was a family friend and familiar with the disorder was nearby and swiftly dealt with the situation, while I practically bawled my eyes out, worried with sick with my baby brother in pain next to me.

Treatment For Hemophilia


The treatment for PWH has greatly improved since 1992 when Hisham and Hazri were 9 and 5, compared to when we were younger. My brothers are currently on a prophylactic treatment where they perform routine self-infusion — anywhere, anytime, tailored to their own schedule — to "add on" the factor they're missing in their blood, so the treatment acts as a preventative measure.

Back then though, such treatment was not available in Malaysia. My sisters and I often tagged along with my parents when they had to drive my brothers to the National Blood Bank half an hour away for their cryoprecipitate transfusion, which was done while they sit or lay down for 45 minutes or so. 
Hazri performing the factor self-infusion

Empathy is rarely a kid's biggest strength. To a bored unaware young child, waiting around for 45 minutes could feel like hours. I felt awful about my brothers' predicament but after a quick while, I always became more concerned with how I could win the waiting game myself. I hunted for safe open spaces in the blood bank, away from the rows of recliners and needles, to convert into my playground.

After my brothers were done with their treatment (and sometimes, after my dad's regular blood/plasma donation too), all of us would just resume as normal: goofing around in the car on our way home and nudging each other to test who was brave enough to ask my dad to take us all for hot dogs and root beers at A&W, which was en route.
(My dad is a regular joker with his nephews and nieces but strict with us, hence the nudging instead of outright asking, but he always did love making the surprise turn to A&W even when none of us wanted to step up and ask him!)

Public's Perception & Misconception of Hemophilia


Hemophilia is the lesser-known blood disorder. Generally, non-Hemophiliac people who know about it either: (1) have come into contact with Hemophiliacs, (2) are in the medical/science industry that deals with the disorder in one way or another, or (3) read about it in passing in a biology book at school. It's not a disorder people know about because it's not regularly discussed in the media, or because someone famous has/had it.

PS: Unless you want to count in Queen Victoria, who was rumoured to be a carrier.

When I was 17, the topic of Hemophilia unexpectedly showed up as a blood disorder example in a syllabus in my biology class one day. I was an extremely shy student, never wanting to speak up in class but I decided to force myself to raise my hand because it felt important for me to contribute on the topic. I stood up and announced to my entire class that I grew up with two brothers with Hemophilia, expecting the teacher and my classmates to be mildly curious.

Not that I had ever hidden that fact — all my good friends and the teachers I'm close to knew my brothers directly or knew about them — plus it isn't exactly a topic that comes up in casual conversations.

My biology teacher's immediate question appalled me, though: "Are they bedridden?" I was horrified at the casualness in her question, somewhat implying she thought it was a sure fact — ignorantly, might I add. I could feel my defensiveness creeping in which I tried to quell when I answered, "If you see my brothers walking down the street, you would have no idea that they have any disorder of any kind. They look entirely normal, just like you and me."

My teacher proceeded to give me a long look which I read as disbelief. I was a quiet student in one of the best classes but with biology being my weakest subject coupled with my indifference to it, I was certainly not her favourite student by any means. That certainly didn't justify how she reacted though. I could feel myself growing red, both from the attention and the growing indignation. She then changed the subject without saying another word to me and I sat down, completely disappointed that a teacher just imparted a piece of utterly false information to my peers.

And disappointed that I didn't have the moxie to correct her further that day.

Raising Awareness of Hemophilia


I sincerely hope my teacher — who was actually an all-around nice lady, regardless — and my classmates have learned more about Hemophilia since then. There is a need to raise the public's awareness of the disorder, but you know what's just as important, if not more important? Teaching people with Hemophilia, especially young people, how to grow up and thrive without letting the disorder get in their way while leading a normal and healthy life.

Since my father was the president of the Hemophilia Society of Malaysia (HSM) for a few years, with my mom acting like his unofficial secretary, my sisters and I used to unofficially join my brothers in HSM's annual "boys camp". I would sit in some of their sessions, where the PWH were taught these lessons (and more):

  • To do well in life, you start by doing well in school. Since PWH could experience frequent bleeding, labour work is not the way to go later in life so a good education can ensure a stable job in a safe environment
  • How to safely exercise the proper way to avoid or minimise joint damages, plus learning the best lifestyle for PWH
  • How to take care of their oral health to prevent gum bleed
  • Teaching them to self-infuse at home

Until today, HSM continuously strives to educate PWH especially the younger ones by way of organising workshops and programs for them.

How you can help


Now, I want to ask two huge favours from you:

1. Donate to the Hemophilia Society of Malaysia (HSM) to help improve the lives of PWH


To you, my dear reader: I would very, very much appreciate you spending a little time making a donation to the Hemophilia Society of Malaysia to help our PWH, via Kitafund which is Malaysia's own crowdfunding platform. Please click on this link: http://bit.ly/2mevbwx to learn more!

My younger brother Hazri is a competitive swimmer, having swum in many national open-water swimathons. I am proud to share that later this month, he will join his first-ever Half-Ironman in a relay team as the swimmer. Through this, he aims to raise public awareness about the disorder as well as making it as his personal fund-raising project for the Hemophilia Society of Malaysia.

With the fund he raises, the society plans to organise two outreach programs for PWH in Sandakan and Kuala Terengganu. You can read about the programs and the details of his fund-raising effort on Kitafund: A Hemophiliac's Half Ironman Swim Journey For Charity

EVERY RINGGIT/DOLLAR/POUND/EURO/YEN etc. COUNTS! We appreciate all of your contributions, however big or small.

Hazri at the start of one of his open-water races in Port Dickson

2. Share his YouTube video on YOUR social media


In this video A Hemophiliac's Half Ironman Swim Journey for Charity via Kitafund you will get to hear Hazri's account of his growing-up story as a Person With Hemophilia. Please watch if you have the time, to understand what it is like living with this bleeding disorder. I would also very much appreciate you clicking the "SHARE" button under the video to share it on your favourite social media platform(s) to help spread the awareness even further! (You can watch the video below but to share it online, please click on the link provided up here to find the "SHARE" button.)



•     •     •     •     •     •     •

I am so proud of the men both of my brothers have come to be! I love them with all of my heart and wish them all the happiness and success that they deserve.

I want to thank you from the bottom of my heart for reading my lengthy post, and my thanks come from even deeper if you decided to make a donation. Thank you, thank you, THANK YOU.

I also ask that you pray for the safety and success of my brother and his teammates' in their upcoming Half-Ironman event.

If you have any question regarding the disorder — or even Hazri and Hisham's or my respective experience  please do not hesitate to post the question in the comment section down below. I will try my best to provide the answer to it.

Thank you, and lots of love from me to you 

PS: You can follow my brother @hazriaris on Instagram where he shares about living with Hemophilia and his swimming adventures.

Comments

  1. Oh my LIYANA! I feel very sad that it has taken me so long to catch up on your blog posts!! Clearly you have grown very close to your brothers and been a brave and loving support for them as they struggle to continue theit battles with this difficult disease.
    Thank you for sharing their story and the beautiful family photos too! These are brave young men and role models for us all! Love, jude

    ReplyDelete
    Replies
    1. Thank you for your kind words, Judy <3 I love my brothers so much and always wish I could do more for them. They are certainly good role models for the young people out there.

      Delete

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