Living with lupus

Thursday August 23, 2012

Living with lupus

WHEEL POWER
By ANTHONY THANASAYAN

SYSTEMIC Lupus Erythematosus (SLE) is a chronic auto-immune disease in which the immune system attacks the body’s cells and tissues, resulting in inflammation and tissue damage.

Dayang Norhidayah Ngah who hails from Kuala Terengganu knows all too well about SLE. Her nightmare began back in November 1999.

Dayang Norhidayah Ngah takes her battle with lupus in her stride.

Dayang was 10 when she came down with a fever that refused to go away.

“My parents thought it was nothing unusual and took me to the clinic,” said Dayang.

When Dayang’s feet started to swell, she was sent to the Kuala Terengganu General Hospital. Despite a month of intensive medical tests, Dayang’s condition deteriorated and she was referred to several child specialists in Kuala Lumpur.

“I remember Dec 9, 1999, clearly. It was the day the hospital became my second home,” said Dayang. “It took a full two weeks before my ailment was finally diagnosed. Back then, no one in my hometown had heard of SLE.”

Lupus attacked Dayang’s kidneys, causing inflammation. She had to go through many rounds of treatment to stay alive.

Dayang was put on dialysis. She was given steroids which resulted in her having a “moon face,” a common side-effect.

Lupus also attacked her brain, and Dayang had a violent seizure and ended up in ICU. It was another four months before her condition was brought under control.

Despite missing many lessons in school, Dayang managed to get straight As in the UPSR exams.

“My mum taught me Maths, Science and English when I was admitted to hospital and at home when I was not able to attend classes. My sisters helped, too.”

Today at 23, Dayang takes her battle with SLE in her stride. She shuttles between Kuala Terengganu and Kuala Lumpur for her treatments.

Dayang is on peritoneal dialysis, which is done at home, as her kidneys have been damaged.

Dayang maintains a positive outlook despite not being able to live a normal life and enjoy outdoor activities like her peers.

“I am easily susceptible to illness and infections. If I were exposed to sunlight for 15 minutes, I would develop high fever and break out into rashes. There would be reddish butterfly marks on my skin, especially on the areas where my skin was exposed to the sun.

“Sometimes this makes me feel depressed. But I always remember how fortunate I am to have a very supportive family. My Abah is my rock. He is a positive and strong man. He never gives up hope. Ma is a godsend. Her patience inspires me. My sisters Kak Long, Ngah, Obie and Ana, always cheer me up when I am down.

“Although I live with lupus, I don’t allow it to stop me from pursuing my dream to get a diploma in accounts in Universiti Teknologi Mara, Shah Alam.

“I’ve come to accept reality and I try not to lose hope. I’ve learnt that the best way to deal with SLE is to take my medication conscientiously, and understand the disease and its impact on me, both physically and emotionally. It is also vital to follow the advice of the doctors and learn to stay on top of lupus.

“Despite what I have to go through, I am able to have a good quality of life,” added Dayang.