Maxis Home Adoption Programme Launch 18.07.2012

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.

Phone booths for the disabled by next year

Monday July 30, 2012

Phone booths for the disabled by next year

PENANG is ready to introduce disabled-friendly public telephone booths by the end of the year.

Penang Municipal Council councillor Muhammad Sabri Md Osman said two telecommunication companies were already planning with the council to install this type of public telephone booths.

“Among the guidelines set by the council for the companies are at least one disabled-friendly public telephone booth in shopping complexes, government offices and public places such as the ferry terminal, bus station and airport,” he said.

He said the disabled-friendly telephone booth should also be placed near information centres.

They should be easily visible with a big signboard.

“The telephone must be easily reachable for those on wheelchairs and have a foldable seat for those with mobility problems.

“The coin slot should be between 0.90m and 1.20m from the ground,” he said after the council meeting held at the City Hall recently.

He said the phone should have push buttons with Braille font for the visually impaired.

“The space of the booth should be around 1.2m by 0.85m.

“There must be no obstructions in the area to allow the disabled to access the booth either from the front or the sides,” he said.

He said the telephone wire should also be at least 0.75m in length.

Selamat Hari Raya Aidilfitri

Hi All,

I take this opportunity to wish everyone

Selamat Hari Raya Aidilfitri & a safe journey for those who Balik Kampong.

For all others have a Happy Holiday & Open House visits.

Cheers,

G. Francis Siva

President of ILTC Malaysia

Annual General Meeting of the Independent Living & Training Centre Malaysia

9th Annual General Meeting of the Independent Living & Training Centre Malaysia which was held on 24th of June 2012, at 10.10am, at ILTC Malaysia, 76, Jalan Taman Garing 4, Taman Garing, 48000 Rawang, Selangor Darul Ehsan.

 Speech by Y.B. Gan Pei Nei – ADUN Rawang

Y.B. thanked President and ILTC Malaysia Committee Members for inviting her to the AGM.

Y.B. congratulated ILTC Malaysia for a significant role and making a meaningful contribution in developing the capabilities and improving the knowledge skills for the disabled.

Y.B. informed that, all 12 local councils (PBT) in Selangor have been ordered to set up OKU Technical Committee by EXCO Kerajaan Negeri Selangor. At presently, the only Councillor Mr. Anthony Thanasayan from MBPJ is doing very well but other 11 local councils are not active. Therefore she expressed that, this matter will bring up again to the Selangor government initiatives to push and help all local authorities in Selangor to setting up of technical committees for the disabled and have linked more closely with the local council and provide input to the developments of the disabled.

Y.B. added that, in Rawang town there are not accessible for the disabled therefore she requested ILTC Malaysia to work closely with local council to provide positive and effective ideas to build a better structure for the disabled.  

In conclusion, Y.B. informed that, there are some facilities provided by Kerajaan Negeri Selangor example educational facilities, Air percuma, Tabung Warisan Anak Selangor, Skim Mesra Usia Emas etc…. She has requested our members to register under the skim to benefit.

The 9th Annual General Meeting ended at 11.30 am. with a vote of thanks to President and lunch was served to all present.

Building Committee Meeting

Building Committee Meeting held on 9th July 2012 at Lot 114, Kg. Sungai Dua Tambahan, Taman Garing , 48000 Rawang, Selangor Darul Ehsan

President of ILTC Malaysia thanked the all the Members for their presence to the 2nd Committee Meeting.