It Changed My Life

Pretty in pain to drive away dark thoughts

Ms Felinda Soh has von Willebrand disease, a blood disorder so rare that her medication costs her nearly $10,000 a month. Because she can't have children, she keeps two teddy bears - Baby and Bebe. She was so depressed about her medical condition tha
Ms Felinda Soh has von Willebrand disease, a blood disorder so rare that her medication costs her nearly $10,000 a month. Because she can't have children, she keeps two teddy bears - Baby and Bebe. She was so depressed about her medical condition that she once tried to kill herself, but has decided to live life fully because it is too precious.ST PHOTO: KEVIN LIM
Ms Soh needs replacement therapy twice a week, when concentrated blood-clotting factors are injected directly into a vein.
Ms Soh needs replacement therapy twice a week, when concentrated blood-clotting factors are injected directly into a vein.ST PHOTO: KEVIN LIM

IT services boss hides her many health woes beneath her well-put-together exterior

Ms Felinda Soh's shoulder-length hair is teased into soft glossy curls, her eyelashes artfully mascara'd and her shapely legs set off to advantage in a short flared skirt and five-inch heels.

The 37-year-old is a picture of sassiness and poise.

But looks deceive. "Right now, I'm in pain. My abdomen hurts," she says. She has ulcers in her intestines. Recent tests also show growths in her liver.

In fact, she is a big loser in the health lottery. Since her teens, she has been in hospital more times than she cares to remember for conditions ranging from hypothyroidism - a thyroid disorder which causes symptoms from tiredness to constipation - to adhesion colic, a form of chronic pain arising from movement of parts of the intestines. She also had a lump removed from a breast a couple of years ago too.

Ms Soh does not have a colon either. It was taken out in 2008 because she suffered from inflammatory bowel diseases.

"I can't eat any fibre, so no vegetables for me. If I did, I would keep throwing up," she says.

If all that is not bad enough, she is among the rare few with von Willebrand disease, a hereditary bleeding disorder which affects the blood's ability to clot and can cause extended or excessive bleeding.

Diagnosed more than 10 years ago, Ms Soh needs replacement therapy twice a week, when concentrated blood-clotting factors are injected directly into a vein. The treatments cost nearly $10,000 a month and, after medical subsidies, she pays nearly $3,000.

"And I can't have babies. The disease is hereditary. My husband won't let me because it is just too dangerous," says Ms Soh, who is married to the manager of a food business.

Employers have given her a wide berth. And when her health woes got her down, she once tried to kill herself. But the thought of leaving her grandmother and loved ones behind stopped her.

She now focuses her energies on appreciating what she has, which is why she always looks like a million bucks.

"In order to stay positive and avoid feeling inferior, I doll myself up. When I visit the hospital for appointments and treatments, people think I'm a visitor, not a patient. I feel confident and normal when I am in a nice dress and nice hairdo. A sick gal is still a normal gal," she says.

Ms Soh is the founder of CommServe, a company specialising in IT services, including surveillance systems and infrastructure cabling. She is the younger of two daughters of a taxi driver and a clerk.

Home when she was young was a house in Florence Road in Hougang, where her grandfather used to run an ironworks factory.

Life was good, but when she was seven, the family experienced financial trouble.

"I'm not sure what happened but the business was wound up and the factory closed. My father, who was working for my grandfather, became a taxi driver," she says, adding that the family then moved into a five-room flat in Hougang.

Her health problems surfaced when she was four or five and would bruise easily or have frequent nose bleeds.

"I didn't need to fall or knock against anything. I'd just wake up with bruises. My parents would tell me to stop being so violent with myself or stop sleeping with soft toys."

Her nose bleeds were nasty and frequent. "But nobody thought of taking me to the hospital. They'd just say, 'You're too heaty. Drink more barley water to cool down.'"

Although she was gifted in art, especially in Chinese brush painting, the former Parry Primary pupil did not do well in the Primary School Leaving Examination and went on to the Normal Stream at Anderson Secondary.

She then went through a troubled period in her teens.

"I started to become very vain, always looking out for modelling auditions in magazines. I'd lie to my mother and instead of going to art lessons, I would go to tea dances at Warehouse and Fire, and get involved in fights and extortions," she says, shaking her head.

Things came to a head when she ended up in a police station when she was 14. A couple of her friends had gone to a boutique in Centrepoint, nicked an item and passed it to her while she stood outside the shop. They were caught and taken to the Tanglin Police Station, where her mother bailed her out several hours later.

"It was scary. I nearly peed. It was a very good lesson. I told myself I should never put myself in a situation so shameful again," she says.

She buckled down, concentrated on her N levels, went on to do her O levels and did well enough to study electronic engineering at Temasek Polytechnic.

Her health, meanwhile, worsened. In addition to the nose bleeds, there were vomiting and fainting spells and excruciating menstrual cramps. Doctors diagnosed her as having a perforated septum, when a hole develops in the cartilaginous membrane dividing the nostrils.

Still, she tried to live life normally. Just before entering the polytechnic, she sold laptops for an IT company and did so well that she continued working part-time while studying for her diploma. In a good month, she earned up to $2,000.

There were stints selling magazine advertising space and marketing server systems after she graduated in 1999.

In 2002, she joined a subsidiary of SingPower as a channels manager, marketing a voltage compensator. The job involved a lot of travelling, and while on a work trip to Taiwan the following year, she was involved in a car accident.

She and a colleague were heading back to their hotel after dinner with a client when their taxi swerved up a kerb and landed on its side.

The colleague was slightly injured and healed, but Ms Soh's many bruises would not go away. Then a searing pain in her stomach got her admitted to Singapore General Hospital one night - she was bleeding internally.

She stayed a month in hospital, undergoing a battery of tests. Suspicions that she might have leukaemia were ruled out after a bone marrow test.

"Finally one day, they came to me and said, 'You have von Willebrand disease.' They gave me this card, and I have to carry it with me everywhere I go," she says, fishing out a photo ID stating she has the condition.

The diagnosis explained all the medical problems dogging her - the nose bleeds, the easy bruising, the bleeding gums and the prolonged, heavy menstrual flow.

There are three major types of von Willebrand disease but Ms Soh says her doctors cannot put a finger on what hers is.

She was told she would need replacement therapy twice a week.

"I have to inject (blood-clotting factors) into a vein. In the beginning, I sometimes had to prick myself up to 20 times before I could find a vein," she says.

The condition turned her life topsy-turvy. She had to travel with syringes and medication, which was not only expensive but also had to be stored and administered at certain temperatures.

She felt stressed and left SingPower in 2004. But finding another job was not easy.

"When you tell companies you have this condition, no one would hire you. At the same time, I didn't want to lie," she says.

Then cabling company Anixter head-hunted her for its marketing team. Because her probation was half a year, she decided to give her all to the job and stopped going for her twice-weekly transfusions.

"The hospital called but I told them I was too busy. I said I would be back when my probation was over," she says.

The gum bleeds and bruises returned, and went on for a year.

No one at work knew her woes. One colleague asked if her bruises were the result of sexual attacks.

But two clients - who became her close friends - wormed the truth out of her and hauled her to hospital. But the next few years were even more fraught.

Severe bleeding led to a very messed-up colon, and most of it was removed in 2008.

Citing doctor-patient confidentiality, Ms Soh's doctor declined to be interviewed. Another corolectal surgeon, Dr Eu Kong Weng, said the procedure is not common.

"It is usually performed on patients who are bleeding very badly in the colon or those suffering from more than one type of colon cancer at the time of diagnosis," said the medical director of Colorectal Surgeons Inc.

Ms Soh says: "The operation was expected to last four hours but I was in the operating theatre for eight. I was told if I had more procedures, I may have to have a stoma. When I heard that, I wept for three days." A stoma is a surgically created opening on the surface of the abdomen to divert the flow of bodily wastes.

She was in hospital when, one day, she tried to slit her wrists.

"But I thought of my mum, my grandmother and how sad they would be and that stopped me. I went to the nurse station to ask for help," she recalls.

She has since decided to live life on her own terms.

"Taking care of a sick person is never easy, it's wrenching, tiring and frustrating. I don't want to be a burden to anyone physically and emotionally. I do not want to affect anyone's life, so the only way is to be independent, positive and normal," she says.

Ms Soh started CommServe in 2008 when the IT department of the company she was working for closed down.

She handles all her medical matters herself and goes to doctors' appointments alone. If she receives bad news about her health, she gives herself 48 hours to cry.

"I'll then pick myself up, give myself reasons to be positive and break the news to my loved ones in a light and cheerful manner so as to lessen the impact on them."

Sales manager Jorita Huang, 34, has known Ms Soh for more than 10 years.

"She was my superior and was very focused and really took care of her staff. That's why we became good friends. So many things have happened to her but she is still so optimistic. Her strength and willpower are amazing. I would have given up a long time ago if I were in her shoes."

Married since 2007, Ms Soh says her husband understands what she is going through and is supportive.

"He stays calm and helps me to mix my medicines. I feel bad that he has to accept someone as incomplete as me, but I also tell myself this sort of thinking will not lead me anywhere."

With a laugh, she lets on that she fulfils her maternal side by fussing over her two soft toys - Baby and Bebe. She has a collection of clothes for the two bears.

The three As, she says, guide her life.

"I Appreciate what I am still left with, Accept what I have lost and just Advance what I need to do."