As lupus can be managed, many who have the disease find that they lead full lives being armed with knowledge about the condition, being in touch with their doctors and knowing their triggers.
Jennifer Oh, 40, teacher
Oh found out she had lupus in 1999 when she discovered a butterfly rash on her face after a run. She received a referral from the polyclinic to see a rheumatologist in Tan Tock Seng Hospital. She was given steroids to take as part of her treatment and put on 30kg because of it.
Knowing her triggers – stress such as from studying for major exams and sun exposure – and working closely with her doctor has helped. “I can detect a migraine coming (from stress) and will take a break when I sense it coming.”
She also eats healthy and stays active to keep the weight off and reduce stress.
Joy Tan, 36, staff nurse
Tan was diagnosed in 2009. She had a sudden onset of heart palpitations, chest pains and had low red blood count. Upon further tests, doctors found that her immune system was attacking those red blood cells.
“Lupus affected my kidneys in 2010 and I had severe body swelling, and needed a biopsy, Thankfully, my body responded well to the treatment. After 10 years, it can still be quite challenging as the symptoms can be quite subtle. But it has gotten easier to recognise the flares early before it gets serious.”
Yoke Yin Walker, 76, housewife
She was diagnosed with Systemic Lupus Erythematosus (SLE) in 1996 when she felt unexplained pain and was unable to walk far. After some blood tests with her general practitioner, she was referred to a rheumatologist.
“My lupus tends to affect my skin, joints and eyes. If it’s too hot or too cold, I suffer from rashes. If I cry too much, my eyes will give me issues and I have steroid drops to take care of them. I believe my lupus was brought on by stress as I had just moved with my family to Australia and was finding it hard to cope.
“Apart from the doctor’s medication, I found meditation helps me to stay focused and the practice gives me peace to live with the condition. I enjoy doing qigong and gardening, or just taking time to do my favourite things when I’m unhappy and keep the stress levels at bay.”
Marisa Chan, 40s, works in publishing
Chan had a double whammy when it came to lupus. “My first child was born with a strange rash on her skin. At her first month check-up, the paediatrician was concerned and ordered blood tests. His suspicions were right as she had neonatal lupus.
“He then recommended that I test for lupus myself as newborns inherit lupus through antibodies passed from the mother. The test confirmed I had SLE, although I had no symptoms then.
“Then, during my last pregnancy six years ago, I felt such extreme pain in body that I had to go to the A&E for a pain relief shot. The rheumatologist confirmed that my lupus was now active, and in a big way, and I was put on medication.
“Any flare-ups since then have been minor and the disease is under control. My daughter is now in her teens and healthy. Some parts of her skin are pitted where the lupus antibodies attacked her fat cells as a baby but it’s not severe.
“I’m careful to manage my stress levels and any UV exposure – I avoid gel manicures due to the UV lights used to cure the colour. I protect my health by wears a mask in crowded places like supermarkets and when my children are sick.”