By Priya Suri

On what she describes as the worst days of her life, Nancy Chin said she could not move at all.

'When my clothes brushed against my skin, it would hurt. The part of my head that touched the pillow would hurt. The pain was so bad, I would bang my head on the wall to get some sort of relief,' she said.

Ms Chin, 57, describes the pain as the same type of throbbing you would feel when you have a toothache - except it is all around your body.

The pain was so bad that she couldn't even sit up straight and was bedridden for 31/2 months.

From a healthy 54kg, the 165cm former receptionist saw her weight dip to 38kg. She felt humiliated, having to depend on her husband for everything, even to go to the bathroom.

That was 27 years ago, and Ms Chin was experiencing the first major symptoms of lupus, a disease of the immune system which has no cure.

No one really knows what causes lupus but people with the condition seem to develop antibodies (which usually fight bacteria and viruses) that attack healthy tissue. This produces inflammation in different parts of the body, resulting in pain and swelling.

Doctors first suspected something was amiss when Ms Chin had surgery in 1981 for endometriosis, a condition where womb tissue grows outside the womb cavity.

When her wounds from the operation did not heal three months after surgery, they were puzzled. She didn't have diabetes, the condition normally associated with slow healing.

Ms Chin spent the next two years consulting general practitioners who merely prescribed aspirin for her pain and gastric trouble.

She even tried acupuncture, which didn't help. 'They put 200 needles in me. It wasn't really painful because the pain I felt inside was worse,' she said.

In 1983, at one of her clinic visits, her husband found her slumped in a chair, doubled over in pain.

Lucky for her, this painful attack came at the right time.

A senior doctor at the clinic had just returned from a lupus convention in Australia. He told Ms Chin that he suspected she had lupus.

She was referred to Tan Tock Seng Hospital and his diagnosis was confirmed.

'I was actually happy when he told me I had lupus,' said Ms Chin. 'It was a relief to finally know what was wrong with me. At least I knew the pain was real and I wasn't going cuckoo.'

She was put on a heavy dose of medication, including steroids, powerful drugs that suppress inflammation but has side-effects such as water retention and bloating.

The two triggers of lupus symptoms are stress and sunlight, so whenever she is exposed to either of them, her symptoms flare up again.

One of the most visible symptoms is a rash which appears on parts of the skin exposed to the sun - a condition which is called discord lupus.

'My rash would appear as big mosquito bites that were very close together. They were all over my face, neck and arms,' said Ms Chin, who wears long-sleeved shirts to cover up her scars. 'I also had hair loss and dandruff. For a person with very thick hair, it was quite traumatising.'

She is currently in remission. She goes for a check-up every three months and is on maintenance drugs which help control lupus symptoms.

Ms Chin, who has no children, told Mind Your Body that one of the main things she wants people to realise about lupus is that it is not contagious. 'People used to run away when they saw me. I have also heard of families of lupus patients not wanting to eat dinner with them. I hope people understand they cannot get lupus by standing near us.'

You wouldn't know it when you look at her today, but the bubbly Ms Chin did go through a period of depression.

She said that it is important for lupus sufferers to recognise when they need help and the 10 years of counselling she received from 1999 to 2000 helped her immensely.

Turning 50 was also good for her. She realised that she was not going to dwell on the past and that if she wanted to be happy, she shouldn't waste time.

Her life experiences and caring personality mean that she is perfectly suited for her current role as president of the Lupus Association, Singapore (www.e-lupus.org; tel:6254 9130).

In 2006, she was given the National Health Group Distinguished Contributor Award by President SR Nathan for her 20 years of volunteer work.

She said: 'I think I went through everything for a reason: to help others. Through visiting patients and educating people by giving talks, I have found a mission and it gives me meaning in life.'