Bone problems but her spirit is strong

She was almost knocked down by a cyclist riding on the pavement two weeks ago.

The cyclist had frantically rung his bell as he approached Ms Noor Faezah Abdullah from behind and swerved his bicycle at the last minute to avoid her.

He then shouted at a visibly-stunned Ms Noor and rode off.

The experience left her raging with frustration.

She could hardly be blamed for the close call.

He had been riding on the pavement meant for pedestrians.

Also, Ms Noor, 37, is deaf.

The deafness is the result of an extremely rare condition called Camurati-Engelmann, a disease characterised by heavily-thickened bones.

Only about 300 people worldwide have the disease. 

"I wanted to scold him, but I couldn't," Ms Noor told The New Paper on Tuesday.

"I wanted to explain that I was deaf, but I was too angry to do so. The pavement is not meant for people to cycle fast."

She first learnt she was "different" when she was three years old.

While the other children from her village in Lorong Renjong near Buangkok played "police-and-thief" or climbed trees, Ms Noor could only sit and watch.

Her waddling gait made her too slow to catch up with the other children.

By age 17, she had lost her hearing. An abnormal bone growth ruptured her eardrums.

Three years later, she was diagnosed with Camurati-Engelmann disease.

ANGER AT FIRST

Ms Noor, who has an office administration diploma, added: "At first, I was angry. Out of so many people, why me? The disease affects my whole body, not just one part."

Her biggest fear now is that the abnormal bone growth could put pressure on the nerves in her eyes and lead to blindness.

Ms Noor, who has been working as a data entry clerk at non-profit organisation Bizlink Centre for the past 12 years, is determined to lead an independent life.

She only hopes people are more sensitive to those with disabilities.

Ms Noor, who is single and lives alone in a one-room Geylang Bahru rental flat, said: "I can deal with people staring or kids pointing fingers at me.

"But sometimes it hurts. Maybe there should be more awareness for people with disabilities."

Her illness has forced her to adapt.

She communicates using pen and paper. For this interview, she read this reporter's questions and replied in a slightly muffled manner.

But she is quick when it comes to sending SMS text messages.

Living alone means she has to sweep and mop the floor, cook and do the laundry herself.

She would call her only sibling - her 47-year-old brother - or her nephew only when there is a problem like opening the fan to clean the blades or if an electrical appliance fails.

Her 80-year-old mother lives with Ms Noor's brother. Her mother had single-handedly taken care of Ms Noor when she was bed-ridden for eight months, 17 years ago because of nerve inflammation throughout her body.

Ms Noor said: "My mother would always say, 'It's okay - you're not normal, but you're better than some others. Learn to be independent. So when I'm not around any more, you'll know what to do.'"

But being independent is not easy.

Ms Noor avoids crowded buses as she fears being pushed by passengers. A fall could easily fracture her brittle bones.

Even alighting from a bus that has stopped more than 1m from the kerb presents a problem for Ms Noor because the stretch to the bus stop hurts her joints and legs.

WORK IMPORTANT

Fortunately, she takes company transport most of the time. Work keeps her occupied and gives her a sense of purpose.

She has been saving a portion of her $450 monthly salary and the $130 she gets from the Islamic Religious Council of Singapore (Muis).

If her illness robs her of the ability to walk, the savings will pay for her stay at a nursing home.

For now, her quarterly eye check-ups are paid for by Medifund, a government fund to help needy Singaporeans.

Colleagues and friends help brighten her day and they occasionally invite her to their homes for meals.

One colleague, Mr Lee Choon Seng, explained that every one in the office is "equal" as Bizlink Centre hires people with disabilities to do workshop or data entry work.

Mr Lee, 54, said: "We all have disabilities. So we treat and look at each other as though we're normal."

ONLY ONE CASE ON RECORD HERE, IN THE 1970S

Ms Noor Faezah Abdullah's illness - Camurati-Engelmann - is so rare that medical specialists believe there are only between 200 and 300 people worldwide who suffer from this incurable disease.

According to the US National Library of Medicine, sufferers experience increased bone density "particularly affecting the long bones of the arms and legs".

Calling the disease "extremely rare", Dr Siow Hua Ming, a consultant orthopaedic surgeon from Providence Orthopaedics, said: "There has been one report of a single case in the Journal of the Singapore Paediatric Society in 1972.

"As far as I am aware, that is the only documented case in Singapore."

Two other bone specialists The New Paper spoke to said not much is known about the illness locally

Some of the symptoms include severe pain in the extremities, a waddling gait, joint stiffness, muscle weakness and tiredness.

There may also be vision and hearing problems, and facial paralysis, said Dr Siow.

He added: "They can be treated with steroids to relieve the symptoms, although this is not a cure.

"Painkillers can help relieve the pain and occasionally surgery is used to straighten any deformed bones."

zaihan@sph.com.sg

This article was first published on May 11, 2015.
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