Be wary of lupus

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PROMOTING EVENT: Ingrid (centre), the chapter’s honorary secretary Nurjan Kaidar (right) and honorary treasurer Priscilla Chella promoting the Walk-a-Payung event taking place at the Godown Amphitheatre on Oct 20. Participants are entitled to lucky draw prizes, t-shirt and umbrella.

This incurable disease more common among women, but it attacks male immune system more aggressively

KUCHING: Ingrid Ning fell ill one day, and it took doctors two years to find out what was causing the problem.

She was eventually found to have the ‘Systemic Lupus Erythematosus’ (SLE) disease, which is incurable.

“I was tested for so many illnesses, including AIDS, and they (doctors) could not find anything.

“Imagine one having to undergo testing for so many times. So many blood samples were taken, so many questions asked. There were even embarrassing questions that I had to deal with because nobody knows what it (disease) is,” she told The Borneo Post in an interview here yesterday.

Ingrid is today the president of Malaysian SLE Association Kuching Chapter, and she is on a trail to create greater awareness among the general public about lupus, as many people do not understand its nature or even aware they have it.

She said there are more than 100 known SLE patients here. The youngest diagnosed patient in the country is a two-year-old boy from Johor. In Sarawak, the youngest patient thus far was a 12-year-old girl, who passed away in 2010.

Stressing the need for a strong support system to help patients cope with the stress and treatment, Ingrid said there had been numerous cases where patients hid their predicament from friends and family members.

She cautioned that SLE could be fatal for men as it is somehow more aggressive towards the male immune system.

However, the disease is more common in women.

SLE is a long-term autoimmune disorder that may affect the skin, joints, kidneys, brain and other organs. Being an autoimmune disease, contracting SLE will result in the body’s immune system mistakenly attacking healthy tissues, which could lead to chronic inflammation.

Among the common symptoms of SLE include chest pain, fatigue, fever, general discomfort (malaise), hair loss, mouth sores, sensitivity to sunlight, skin rash, and swollen lymph nodes.

Symptoms may differ for different people, and it may come and go.

Almost everyone with SLE has joint pains and swelling. Some develop arthritis. The underlying cause of autoimmune diseases is not fully known, she added.

“A patient may experience pain all over their body as though you had been hit by a truck. There are also massive headaches and a butterfly-shaped skin rash underneath the eyes, which is one of the most obvious signs. Some people develop ulcers all over their throats and mouths.”

Ingrid said as the disease is life-long issue, there is a need for a strong support system to coax patients to step forward for counselling and help.

Medication, she pointed out, is pricey. On top of the tablets, one would have to go through chemotherapy and even `cyclophosphamide’ treatment (for those with class four SLE).

Ingrid added that treatment could be very exhausting, where patients might have to endure aggressive treatments for three to six months. Blood test would be done every week.

“Chemotherapy treatments cause patients to lose their vision, hair, fingernails as the immune system weakens. SLE is considered a rich man’s disease due to the life-long treatment of patients.

“Not everyone is lucky to have a good support system. Support is not just about advising patients on how to cope with their disease, but also providing something for the treatment and counselling.”

Ingrid believes that raising public awareness would help SLE patients and their family members cope with the disease better.

“With proper management, patients can live a healthy life.”