KUALA LUMPUR: Muhammad Saiful Hakimi, 31, from Kampung Pengkalan Datu, Kota Bharu, Kelantan, often draws attention due to his physical appearance, which is significantly taller than the average person.
Standing at 195cm, Saiful said his physical difference was noticed when he was nine when he was found to be unusually tall compared to children his age.
"I was then taken to see a doctor who diagnosed me with Marfan syndrome."
"At first, many thought my height during school was normal, as most people believed that men should be taller than women," he told Harian Metro.
However, when his height reached 195cm, people began to admire and view his physique with curiosity.
Now a single father following the death of his wife a few months ago, he shared the difficulties he faces in finding the right clothing sizes.
"Usually, when I go shopping for clothes, I head to the plus-size section. I typically wear XXL for comfort."
"For pants, I often struggle to find the right cut and waist size. So, I go to second-hand stores to buy them," said Saiful, who works at a stationery store.
He also mentioned that his five-year-old son, Muhammad Shaqeel Haq, is also very tall, standing at 130cm.
"When Shaqeel was in kindergarten, many thought he had already entered primary school due to his height, which stood out compared to his peers," he said.
"In addition to me and my son, three of my other siblings—Nur Syasya Nazifa, 13; Nur Syazwani Najihah, 17; and Nur Syahirah, 27—also have a genetic condition inherited from our mother, Rahimah Yunoh, 52, who is 171cm tall."
Saiful, his son, his siblings, and his mother were all diagnosed with Marfan syndrome, a condition where individuals are much taller than normal.
"This syndrome also causes me to experience other health problems, such as heart issues and vision problems.
"Currently, the nerve in my right eye has been damaged, affecting my vision," he said.
Saiful also experienced a heart attack and had to undergo heart surgery two years ago.
Meanwhile, his sister Nur Syazwani Najihah, who is 179cm tall, said Marfan syndrome causes her to have a weak immune system, leading to frequent fevers and chronic headaches every month.
"There was one time when I had such a severe headache that it caused my nose to bleed," she said.
Meanwhile, Farah Syakira Azifsafarin, 16, considers her above-average height as a blessing as it has allowed her to achieve success in sports.
Standing at 173cm, Farah is a school athlete and has even represented the country at the Asean level in Vietnam in June.
She said she felt very fortunate to be blessed with height, which allowed her to be selected as a school athlete.
"My height was inherited from my father's genetics, not from my diet or the food I ate since I was young."
"Even though many people around me find my height 'strange' compared to girls my age, I see it as a blessing," she said.
When she was 14, she had reached a height of 168 cm and received various comments from those around her.
"At that time, people would watch me closely and ask all kinds of questions about my height."
"However, I would usually tell them that my height is a blessing from Allah SWT, passed down through my father's genetics," she said.
Universiti Putra Malaysia senior lecturer and researcher Dr Suhaili Abu Bakar Jamaludin said Marfan syndrome is categorised as a rare disease due to the small number of individuals affected by it.
"Moreover, Marfan syndrome is a dominant disorder. Scientists have identified that the presence of a single mutated fibrillin 1 (FBN1) gene, inherited from either the mother or father, can cause the child to be born with the syndrome during their growth period.
"Besides having extraordinary height, Marfan syndrome is also closely related to vision problems, bone health issues, and serious heart conditions," he added.
According to Dr Suhaili, to link an individual's extraordinary height to Marfan syndrome, they need to undergo genetic screening tests.
She further mentioned that there are more than 10,000 genes in the human body, with factors such as diet and environment also playing a role in a person's height.
"Generally, whether or not someone has Marfan syndrome, individuals with extraordinary height may face other challenges, such as finding appropriately sized clothing and shoes," she said.
She added that such individuals must also adapt to an environment that may not always accommodate their physical height in everyday life.