The Hongkongers living with a silent killer, and sufferers hoping to help

When she was diagnosed with Marfan syndrome, Sandy Leung Wai-sum was in her early twenties. She had visited the doctor a week earlier because of neck and chest pains and, like most people, had never heard of the rare and potentially life-threatening genetic disorder, and had no family history of it.

"I was shocked. I was young and there were things I wanted to do that the doctors told me I couldn't do - such as travelling the world, learning glass blowing and starting a family," she says.

But Leung, then a watch technician, carried on with her interest in arts and crafts and eventually began studying ceramics. Despite the dangers that pregnancy presented, she had a daughter, who is free of the syndrome, and four years ago she quit her job to focus on making art.

This week Leung and three other Hong Kong artists whose lives have been affected by Marfan syndrome are staging a ceramics exhibition, titled "A Rare Encounter", at Gallery with a Heart in Ap Lei Chau to help raise awareness of the condition. The newly dubbed "Marfan Four" are Leung along with Judy Chu, Steve Lau Chi-keung and his wife Olga Chew, who does not suffer from the disorder.

Lau, who is also president of the Hong Kong Marfan Syndrome Association, was diagnosed with the condition after suffering a series of heart attacks in his thirties that required emergency surgery.

Experts estimate Marfan syndrome affects one in 5,000 people globally. That means about 1,400 people are living with it in Hong Kong, although there are no precise figures.

It is a genetic disorder and - as it's a dominant characteristic - a Marfan sufferer has a 50 per cent chance of passing it on to his or her children.