Because her illness is so rare, the medication is not subsidised in Malaysia. <small> Cover image via Aylrhmn Gaming/Facebook Ayul Rahman/Facebook </small>
A Malaysian man started a side job to earn additional income after his wife was diagnosed with a rare and incurable disease last year
The man in question, Ayul Rahman, started livestreaming his gaming sessions and has gained popularity online as Aylrhmn Gaming.
According to MyGameOn, since starting two years ago, the 34-year-old currently has over 18,000 supporters on his Facebook page, regularly viewing his streams.
A wedding photographer by day, he started this second job after his wife, Quya Anuar, was diagnosed with pulmonary hypertension
On his personal Facebook account, he often updates and writes about his experiences of being a caretaker of someone with pulmonary hypertension.
He shared that it was an uncommon disease and that he hopes to create awareness about it in Malaysia.
Pulmonary hypertension meant that Quya has high blood pressure in the lungs, which causes her to often feel tired, breathless, and dizzy. The couple, who have been married for five years, initially thought she was just having some acid reflux when her symptoms started last year.
<a href="https://images.says.com/uploads/story_source/source_image/762966/57d3.jpg" rel="segment-308572 noopener noreferrer" target="" title="Ayul's wife, Quya, was admitted to IJN to undergo various medical examinations last year."> <img alt="Ayul's wife, Quya, was admitted to IJN to undergo various medical examinations last year." src="https://images.says.com/uploads/story_source/source_image/762966/57d3.jpg"></img></a> Ayul's wife, Quya, was admitted to IJN to undergo various medical examinations last year. <small>Image via Ayul Rahman/Facebook</small> However, Ayul told Siakap Keli, as the months went on, the episodes became more frequent, and she was tired and nauseous from just walking.
They first sought treatment at Hospital Kuala Lumpur. But it was only after a referral and a series of medical examinations at the National Heart Institute (IJN) that her illness was confirmed.
The doctors also told them there is no surgery for the condition, and it is usually just treated with medication.
Because the illness is so rare, the medications for pulmonary hypertension are limited and not subsidised in Malaysia
In one of his status updates in September last year, Ayul did the math that showed how much a box of medications cost them every month.
“We just had our second check-up at IJN and taken medication for Quya. I just got to know that one of these pills cost RM300, and she has to take one pill a day. That would cost us a total of RM9,000 a month,” he wrote.
The doctors also told them that Quya would have to take this medication for the rest of her life.
Despite the challenges, Ayul hopes that his wife is blessed with a long and healthy life
In one of his latest Facebook updates, he wrote, "I hope she continues to stay strong in this winding journey we call life. Let's go, <i>sayang</i>."
For the time being, he can only work hard day and night to afford the medication that she needs.
He also hopes for support from his followers and that the drug that his wife needs would one day be subsidised to ease his burdens.
Support Ayul's gaming livestreams on his Facebook page here.</p>
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