“The WORST disease you’ve never heard of”: Epidermolysis Bullosa (EB)

With less than 1% of Singapore’s near 6 million strong population afflicted with EB, it is unsurprising that this disease is rather obscure in the eyes of the general population; a gust of cold wind on an otherwise vibrant sunny day. Yet for the 80-100 victims born with EB, each day is wracked with agony, for EB causes one’s skin to be “as fragile as butterfly’s wings”. Mundane tasks, such as bathing or changing clothes, could then cause untold torment.

Mr. Mohammad Shanwaz’s son, Muhammad Raed was born with a severe case of EB. The pain afflicting him was of such severity that he was prescribed morphine at a young age.

Bathing and changing of clothes are a daily challenge for little Raed, with the slightest of touches inciting pain and causing blisters to erupt all over his fragile adolescent skin. Bathing and dressing Raed was a 4-hour daily ritual that required 4 people- one to distract him from the pain, one to pin him down, one miscellaneous helper and finally one to do the actual bathing.

Not only does Raed have to deal with all this physical discomfort, the leers and general disgust of the public are another challenge he has to contend with. Along with that comes the hefty hospitalization fees as well as monthly dressings that total to over $3000 a month, with his father tirelessly taking up 2 jobs- one as a factory assistant, another as a valet-and sleeping a mere 4 hours a day. Luckily, things are looking up, with his father finding a more profitable job in the oil and gas industry and with Debra Singapore helping with three-quarters of the family’s expenses incurred for dressings -a welcome ray of hope in an otherwise bleak outlook for the whole family.

While things are far from perfect, Raed’s journey has come a long way.

Raed has already brought his parents closer together. Said Mr. Shanwaz: “We understand each other better. I’ll be on her side, she’ll be on my side, no matter what happens, until our last breath.”

Ms. Nurzeehan knows she can rely on him “throughout any kind of problem”. “(Given) this kind of condition (EB), not all couples can work together as a team. But I’m blessed (to) get that opportunity,” she said, her voice wrought with emotion.

Perhaps Raed’s plight is a call to us, the general blessed public, that we ought to be thankful for what we have and see the good in the bad: the proverbial silver lining, for at least our skin does not crumble and crack at the slightest of touches.

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