Coping with a rare disease

Azlan Othman

It was a difficult time for Dionysius Brandon Wee when he received his Brugada Syndrome diagnosis.

Better known as Croc Whisperer or Croc Boy Diony, Wee suffers from the Type 1 Spontaneous variance of the rare congenital heart disorder, which manifests itself when the heart is stressed.

In Wee’s case, it feels like a walking time bomb.

“What appeared to be bad stomach flu during a medical check-up in 2016 became a tragic episode of my life,” he recalled. “I received a referral letter from a doctor which stated that based on my electrocardiogram (ECG) report, I had Brugada Syndrome.”

After some research on the Internet regarding the condition, he said, “Tears began to trickle down my face, which I must admit, continued for almost a month. I made the decision to tell my friends and a few close friends.”

Dionysius Brandon Wee

Brugada Syndrome is one of the rarest diseases in the world, affecting one in every 5,000 individuals. The condition was first discovered in 1992, and the first case reported in Brunei in 2005.

When Wee was first diagnosed, he was “only diagnosed with Type 2 or 3 of Brugada Syndrome”. However, his condition soon progressed to the current Type 1 Spontaneous, the most critical of all types.

He had an emergency surgery to have an implantable cardioverter defibrillator (ICD) connected to his heart in the case of a cardiac arrest by sending 800 volts of electric shock to jump start his heart.

“Brugada Syndrome is a disorder that causes sudden death with one of the several ECG patterns characterised by an incomplete right bundle-branch block and ST-segment elevations in the anterior precordial leads,” he explained.

Following his diagnosis, Wee began to share his life story with the world.

“I want to create more awareness on Brugada Syndrome as it is congenital and it is incurable,” he said. “I want people to know that it’s important to get a health check.”

He noted that too many people make the assumption that being young and fit means that one can’t have a heart condition.

“This is an attitude I have personally encountered many times,” he said. “It is a dangerous misconception that needs to be extinguished.”

Since the diagnosis, Wee has been careful to avoid activities that put too much stress on the heart.

“I have to make sure not to push beyond my limit. And I can’t get too excited,” he said.

Having an ICD implant, he also has to be extra mindful of his body temperatures.

“If it increases, then my Brugada goes haywire whereby the electrical impulse will get chaotic,” he said.

At the onset of the COVID-19 pandemic, Wee was among the first to be told to wear a face mask frequently because he “can’t get a fever or it would lead to a seizure, such as uncontrollable limb shaking that could spread to the whole body. It can be quite embarrassing when it happens, especially when you have people around you”.

Wee noted that the condition has also deteriorated his memory.

“I would forget to take my grocery home or leave it in the car. Or leave the change behind after checkout,” he said. “Or eat lunch shortly after having done so just a few minutes ago. Or pay my staff salary twice.”

He added with a chuckle, “Worse, I would even forget what my children look like!”

To Wee, one of the setbacks of Brugada Syndrome is the lack of external signs of ill health, which means he remains on the fringe of the unwell.

“It is so critical yet I’m not entitled to the perks that afford patients with other deadly diseases,” he said. “For one, I can’t claim medical insurance because it’s congenital. Then, there are no priority seating and queue privileges because I look so normal on the outside, unlike people with cancer or other visible illnesses.”

As a result, Wee doesn’t expect sympathy or special treatment from others, save for his own medical team that is well-versed with Brugada Syndrome.

“Even I’m not treating myself with extra care I need because I tend to forget I have a deadly illness,” he said. “Whenever I look in the mirror, all I see is a healthy person looking back.”