THE nightmare began two years ago for Nabiryn Dameah. Then aged 33, she was informed by her doctors that she had Systemic Lupus Erythematosus (SLE).
Known simply as Lupus, SLE is a chronic auto-immune disorder that causes large quantities of blood proteins to act against a person’s tissues.
In short, the body’s own immune system turns on itself, causing widespread inflammation and damage to affected organs. It affects the joints, skin, brain, lungs, kidneys and blood vessels. For Nabiryn, it began with an intense migraine.
“That was just six months after I had given birth to my son,” she recalled in a recent interview with theSun at the family home in Kelana Jaya, Selangor. “The migraine, coupled with a newborn to care for, made sleep quite impossible,” she added.
Nabiryn said that at times, the migraine was so bad that she would roll on the floor and retch. “But I still thought I could handle it,” she said.
Subsequently, she felt a numbness in her left leg. “It reached a point where I had to lift the leg with my hands just to take a step.”
That was when her husband decided that she had to see a doctor. At the hospital, she was immediately put through an MRI (magnetic resonance imaging) process.
“The MRI showed two blood clots which clearly indicated that I had had a stroke.”
Nabiryn said the doctors could not immediately determine what caused the stroke so the initial assumption was that she had multiple sclerosis.
But the worst was yet to come. Two weeks later, when she returned to the hospital, Nabiryn was told that she had Lupus.
“I felt numb upon hearing the news. I knew my life would never be the same again. I cried. It was a dark and emotional moment for me,” she recounted.
In her case, the Lupus had attacked her brain, accounting for the episodes of severe headaches.
It came to a point where her husband Khaliq Halim, 36, had to spoon-feed her.
“It was all a mess. I was even wheelchair bound briefly,” the former radio broadcaster said.
But six cycles of chemotherapy and continuous physiotherapy helped to put her on the road to recovery.
The triumph came on Nov 22 last year when Nabiryn was finally able to lift her son Muhammad Kaiser Zidane and hold him in her arms for the first time. By then, he was already nine months old.
“It was amazing,” she said when recounting that special moment. “He just walked up to me for a hug.”
Now that she is already up and about, Nabiryn and Khaliq have started their own business selling homemade custard. “We sell about 2,000 cups a week,” she said.
The couple use the proceeds from the sale to pay for baby formula for their son.
As expected, the Lupus experience has made Nabiryn see life in a new light.
“Lupus has turned my life upside down but if it wasn’t for it, I don’t think I would be the person I am today.
“I try to be a better person emotionally, physically and spiritually. Lupus is a reminder that everything I have, including my health, does not belong to me. It belongs to God.”
Nabiryn intends to write a book about her journey with Lupus.
“I want to share my experience to inspire others not to give up. There’s a reason for everything.”