Unbroken spirit: Mazwan pursues degree despite rare disease
KUALA LUMPUR: No one would fault Nong Mazwan Fitri if he gave up on his dream of earning a psychology degree, given his rare condition, but quitting is the last thing on his mind.
For the past 27 years, Mazwan has lived with osteogenesis imperfecta, or brittle bone disease.
The rare genetic condition causes bones to be very fragile and susceptible to fractures.
Throughout his life, Mazwan has fractured over 100 bones, each one causing him excruciating pain.
"The pain I experience is not ordinary. Even the slightest movement can break my bones," Mazwan told the New Straits Times.
"I have faced many challenges while studying, but I keep pushing forward because I believe education is important," said Mazwan, who will graduate from Open University Malaysia next year.
Mazwan has not received treatment for his condition since 2018, as his family cannot afford it.
Despite the challenges, he refuses to let his condition break his spirit, especially during celebrations like Hari Raya Aidilfitri.
"I celebrate Hari Raya with my family as always, even though my condition makes it more difficult," he said.
Subang Jaya Medical Centre orthopaedic surgeon Dr Roshan Gunalan said brittle bone disease was caused by a genetic mutation that led to a decrease in Type 1 collagen, making bones more brittle.
"Brittle bone disease is not just about fragile bones.
"It can impact the skin, teeth, and even the heart, making comprehensive medical care essential."
While the disease poses challenges for people like Mazwan, support groups such as the Malaysian Rare Disease Society (MRDS) strive to offer help and resources.
"MRDS will take them under our wing," said the organisation's vice-president, Allida Muhammad Said.
"We offer daily help through WhatsApp chats. We have a large group with nearly 40 people and families affected by the disease."
Allida said there was a shortage of genetic specialists and counsellors in Malaysia.
She said that genetic counselling was crucial in helping people understand complex genetic disorders and inherited health conditions.
"Malaysia has only about 15 genetic specialists and the same number of genetic counsellors nationwide, far too few to meet demand."
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