PETALING JAYA: Like all teenagers, Yap Kien Lee thought he had all the time in the world to do everything. Then came the devastating diagnosis of systemic lupus erythematosus, or Lupus.

It started innocuously enough with a swollen leg in 2001 during a family vacation after the Sijil Pelajaran Malaysia examinations.

But the swelling got steadily worse, and then spread to his face. After a battery of tests at a hospital, he was diagnosed with Lupus, an illness he had never heard of.

It had begun to destroy his kidneys and he said he felt his life was slipping away before he had lived it.

"It was a tough period. Before, I felt like I had time to do everything," said Yap, now a 24-year-old insurance agent.
Then the medication kicked in and his condition slowly improved. Members of the Malaysian SLE Association were also giving him emotional support and sharing with him their experiences.

"I talked to other people with Lupus and they were supportive. When I realised that they had managed to control the disease and lead normal lives again, I found hope to keep on fighting."

Lupus is an auto-immune disease that attacks cells and tissues. It is an unpredictable disease and patients alternate between periods of illness called flares and periods of remission.

It is not known exactly what causes it but the symptoms can be treated, usually with corticosteroids and immunosuppressants.

"Lupus has no cure and can be fatal. Every part of the body can be affected, including the skin, heart, lungs, kidneys and brain," said association president Dr Heselynn Hussein at the launch of the "Anything Butterfly Photography" exhibition, organised by ShutterAsia in conjunction with World Lupus Day.

Dr Heselynn said the association was in the process of setting up an online registry of Lupus patients to gain a better picture of the disease in the country.

More than five million people worldwide suffer from Lupus.

It is estimated that 10,000 Malaysians have been diagnosed with Lupus over the past 30 years. But the number could be higher as many cases were not registered.

Health Minister Datuk Liow Tiong Lai, who launched the exhibition at the 1Utama shopping complex yesterday, said the ministry would provide the funds to set up the registry.

"Despite its enormous health implications, Lupus is under-recognised and the exact number of patients is unknown," Liow said.

The exhibition on the first floor of the shopping mall in Bandar Utama ends on Sunday. Talks on Lupus will be held by medical experts, while members of ShutterAsia will discuss the art of photography.

Also at the launch were the co-founders of ShutterAsia, Gareth Davies and James Wu, and Malaysian SLE Association vice-president Dr Esha Das Gupta.