Living With Lupus

SYSTEMIC Lupus Erythomatosus or SLE is a chronic auto-immune disease.

It is a mysterious condition where antibodies that are supposed to protect the body against disease go berserk and suddenly start doing the reverse - they attack healthy human cells and organs.

Dayang Norhidayah Ngah who hails from Kuala Terengganu knows all too well about SLE.

Her nightmare began back in November 1999.

Dayang was very much a normal 10-year old girl when she suddenly contracted a rather stubborn fever that refused to go away.

"My parents thought it was only a normal condition and took me to the clinic," said Dayang.

But the alarm bells started sounding when Dayang's feet started to swell as well.

That sent the young Dayang to the General Hospital in Kuala Terengganu.

The little girl's woes, however, didn’t arrest there.

Despite a month of intensive medical tests, Dayang only got worse by the day until her condition became life-threatening.

Some quick-thinking decisions by the doctors in Dayang's hometown finally saved the day.

Dayang was finally referred to several child specialists in KL.

"I recall the date vividly: December 9, 1999 - the day when the hospital became my 'second home'," said Dayang to Wheel Power.

"Even then also it took a full two weeks before my ailment was finally diagnosed," added Dayang.

A medical sampling of Dayang's kidney confirmed the young girl and her family's worst fears.

"At that time no one had ever heard of SLE in my town. We were all blur about what it was and how it affected people who had the condition," Dayang pointed out.

In her case, lupus attacked Dayang's kidneys causing inflammation. She had to go through scores of treatment just to stay alive.

One of them was dialysis.

Dayang also had to survive the intake of steroids - as many as 12-tablets a day, resulting in the common “moon face” effect.

SLE also attacked her brain, causing a severe seizure landing her in ICU.

It wasn't until four months later when the medical experts finally brought the SLE under control.

Today at 23, Dayang takes all her struggling with SLE in her stride.

She has had to tolerate embarrassing side effects, such as her hair falling off to become almost bald, low immunity to travelling up and down between Kuala Terengganu and KL for treatment.

During her UPSR exams, she could only attend 40 days of school due to her symptoms.

"However through Allah’s blessings and sacrifices made by my parents, I managed to get straight A's!

"My mum taught me maths, science and English when I was admitted in hospital and at home when I was not able to attend classes. My sisters helped too!"

Because Dayang's kidneys have been damaged, she undergoes peritoneal dialysis which is done at home.

The treatment is conducted for at least four times a day - something that has been going on since 2001.

"Though my life is not like other young persons my age, and I can't take part in normal activities like sports that others do, I continue to remain positive about my life.

"I am susceptible to illness and infection easily and quickly. If I am exposed to sunlight for 15 minutes, I would have high fever and rashes of reddish butterfly marks on my skin especially on the areas where my skin is exposed to the sun.

"Sometimes this makes me feel depressed. Though I suffer, I never forget how very fortunate I am still to have a family who constantly supports me all the way!

"They are by my side no matter what. My “Abah” is my strong rock, a positive and strong man in my life, he never gives up hope.

My “Ma”, a godsend inspiration with her never ending of patience in times of difficulty.

My sisters “Kak Long, Ngah, Obie and Ana” always pull 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 University Teknologi Mara (UiTM) in Shah Alam.

"I’ve come to accept reality and always try not to lose hope in my situation. I’ve learnt that the best way to control SLE is to never to fail taking my medications and always do so in time.

“It is also vital to follow the advice from the doctors as well as to keep learning more about lupus and how to stay on top of it.

  

"Despite what I have to go through, I am able to still maintain a good quality of life though I have the disease.

“The best way to deal with SLE and face life is to understand the disease, its impact on the physical as well as the emotions." Concluded Dayang.

The End

PET+BLOGSPOT is the ONLINE BLOG of the Malaysian Animal-Assisted Therapy for the Disabled and Elderly Association or Petpositive. Our stories are CURRENT, ACCURATE and RELIABLE. We offer both local and foreign news on animals, disability and the elderly. PET+BLOGSPOT was first established in October 2007. Our hits since then are now 150,000 and ever increasing! PET+BLOGSPOT is updated daily. Kindly note that views expressed in PET+BLOGSPOT are not necessarily those of PETPOSITIVE. You may also visit our Webpage by browsing: www.petpositive.com.my You can also find us in Facebook under PETPOSITIVE EMPOWERMENT. Please sign up as a FOLLOWER of this Blog if you haven't done so already in order to show us your kind support for our work. Thank you!