M'sian man, in his 20s, has to change his diaper 8 times a day due to rare condition, was rejected for disability card for 'looking normal'

A young Malaysian man living with a severe, rare congenital condition says he has been rejected for an OKU (Malaysia's Persons with Disabilities) card because he appears physically normal, despite needing to change eight adult diapers a day, according to Sin Chew Daily.

Muadi (not his real name), who is in his 20s, was born with Cloacal Exstrophy, a rare birth defect in which the excretory organs fail to develop normally in the womb.

Multiple major surgeries at a young age

To keep him alive, doctors performed multiple major surgeries in 2004 to reconstruct his urinary tract and anus, per Sin Chew Daily.

But because his nervous system did not fully develop, the surgically created excretory pathways still cannot function properly.

"My brain cannot receive excretion signals. I usually only realise my diaper is full after it overflows. I grew up never being able to shake that helplessness."

According to Sin Chew Daily, a specialist had previously recommended a specific surgery to make daily life more manageable, but Muadi refused. Past trauma from treatment, including having a catheter forcibly inserted into his urethra, made him unwilling to undergo further procedures.

Bullied in school, struggled to hold down jobs

Growing up was difficult. He is deeply grateful to the aunt and uncle who stepped in to care for him during childhood while his parents worked to support the family.

Sin Chew Daily reported that in primary school, Muadi was frequently bullied by classmates who would peek over toilet partitions while he changed his diapers and mock him.

He said:

"They would climb over the toilet partition to peek at me and mock me. Their taunts made me cry often and question why fate treated me this way."

After completing his SPM (Malaysian Certificate of Education), he worked four jobs in the F&B industry, but his body could not sustain the physical demands. He also required two hospital check-ups a year.

He said:

"I have to go to the toilet during my break, and change my diaper every two hours. On top of that, fearing dismissal, I had to hide my condition."

His body paid the price at work, too. After a shift that required a lot of walking, he developed blood in his urine and was hospitalised for a week. Doctors told him to cut down on physical activity, as his kidneys are highly sensitive to strain.

Rejected for OKU card for "looking normal"

Despite the severity of his condition, Muadi told Sin Chew Daily he was denied an OKU card on the basis that he appears physically normal to others.

The OKU card entitles registered persons with disabilities in Malaysia to access support services, facilities, and financial assistance.

Planning ahead, alone

According to Sin Chew Daily, Muadi has come to terms with the fact that his condition makes marriage unlikely for him, and has chosen not to pursue it. He has even begun visiting nursing homes to plan for his long-term care.

He said:

"Although I often wonder who will take care of me when my parents are no longer around, I remain grateful that God has still granted me the ability to continue seeking suitable work, so I can repay my parents' kindness."