Rare Disease Won't Keep Him Down

FOR now, Mr Philip Chang can still use a walking stick to get around. However, he feels severe pain shooting through his knees if he stands for more than 30 minutes.

The 40-year-old suffers from limb-girdle muscular dystrophy (LGMD), a genetic condition that causes his shoulder and hip muscles to weaken over time. His condition is so rare that only one other person in Singapore has it. The Hong Kong born Chang does not even know the medical specifics of his condition, saying: "It doesn't matter if my version of LGMD is rare or common. I would rather focus on what I can do and do it well.

"Eventually, I'll end up in a wheelchair. But I hope that will be delayed."

President of the Muscular Dystrophy Association Singapore Yee Woon Chee said there are 20 versions of LGMD. The society has 10 members with various forms of LGMD, versus over 50 with the more common Duchenne muscular dystrophy, which can be life-threatening.

Like his three siblings, Mr Chang was born able-bodied. But his relatives noticed him limping slightly during his paternal grandfather's funeral 13 years ago, when he was still living in Hong Kong.

An operation to correct his heel tendon left him in a cast for six weeks, causing his muscles to waste away more quickly. Still, the financial controller at Standard Chartered Bank, who moved here in 1991, was shocked when, in 2000, doctors confirmed that his condition would continue to worsen.

But he has accepted the fact: "Disabled people are simply unlucky. It's up to the individual to maximise what he does in the time he's given."

So Mr Chang took up the challenge of being one of StanChart's 13 Diversity and Inclusion champions. Besides planning activities that encourage a better work-life balance, like monthly staff events, he also spoke at last month's disability awareness job fair at HDB Hub, which offered over 300 employment openings.

He said: "Disabled people tend to be more loyal to their employer as it's harder for them to find a job." His employers have been supportive.

When his department moved to Battery Road last year, his former boss waited three months for a 20th-floor unit: Lower-level restrooms are situated between two floors, requiring Mr Chang to continually negotiate staircases.

He was also lucky in love, winning the heart of Singaporean Eileen Lee while studying at Australia's Murdoch University, and his father-in-law, Mr Lee Lian Chong, 66, respected his daughter's choice. The couple wed in 1995 and have two daughters, Vanessa, 11, and Amanda, seven.

Observed Mr Chang: "Singapore society has become more gracious, and small acts like not parking in a disabled lot definitely help us get around."

Experts on Duchenne Muscular Dystrophy

This is a video by experts on the genetic disease that affects many young boys around the world : Duchenne Muscular Dystrophy

Treatment of FSHD

Here, a patient of FSHD or Facioscapulohumeral muscular dystrophy talks about the effects of the disease and the treatment he sought in China using cord blood stem cell