Fighting ignorance about thalassaemia is the best way to fight discrimination against people with this blood disorder.
Apart from her slight limp, Janice Kua is just like any other person. For years, she lived alone in London while pursuing her degree in Music, Media and Events Management: she climbed three flights of stairs daily to get to her studio unit, and she commuted by bus. Today, she is the communications executive at the state’s tourism bureau, Penang Global Tourism.
But what passers-by might not know is that Kua is thalassaemic: she inherited thalassaemia from her parents who are carriers. Diagnosed with beta thalassaemia major, she had her first blood transfusion when she was only two months old.
Thalassaemia is a genetic blood disorder. People living with thalassaemia are unable to produce enough haemoglobin, which leads to severe anaemia. Haemoglobin is found in red blood cells and its function is to carry oxygen to all parts of the body. When there is insufficient haemoglobin, oxygen cannot get to all parts of the body. Organs then become starved of oxygen and are unable to function properly.1
There are two primary types of thalassemia: alpha thalassaemia and beta thalassaemia disorder. Symptoms appear in the first two years of life and include paleness of the skin, poor appetite, irritability and failure to grow. Proper treatment includes routine blood transfusions and other therapies.2
Bone marrow transplants (BMTs) are a cure for thalassaemia, but they are not common in Malaysia. According to Dr Foong Wai Cheng, senior lecturer in paediatrics at Penang Medical College, “ The success rate is higher with one’s siblings’ marrow, provided that the sibling’s blood is compatible. BMT is to be done before the patient is seven years old with adequate prior transfusion and iron chelation. Even without BMT, as long they are well transfused and well chelated, and without other complications turning up, a thalassaemia patient’s life expectancy is the same as any other person.”
Overcoming the Barriers
“Thalassaemia is part of my life. Just like having teeth that must be brushed and hair that must be washed, I go for a blood transfusion every three weeks when my blood is low. From the blood transfusion, I will become iron overloaded which, in the long run, will destroy my organs. I am on daily oral medication and injections to remove excess iron. This is normal for me,” Kua says.
The strict medical maintenance is not only keeping her alive, but it is keeping her healthy, too. “I do regular tests, scans and check-ups to ensure that everything is on the right path,” she says. “In fact, at any one time, we are probably healthier than anyone else around as others may not be monitoring their health as closely as we do. That’s why it is very discouraging when most of us are not in the workforce simply because we have a blood disorder.”
There is for example, the case of 29-year-old Sarah Tan (not her real name). She did not get through her probation at a private hospital as a clerk after the hospital found out she has thalassaemia. Though now she has found employment, the experience led her to lie about her condition – she did not reveal that she has thalassaemia to her current employer. “Like everyone else, I need a job. I need to put food on the table and I’ve got rent to pay. On top of that, medical treatments are not cheap – they cost me RM135 (for the blood transfusion) every three weeks and RM500 for my daily vitamins and medications.” Tan says.
However, her current employer has begun to question her absence when she has to go for her blood transfusion. “We are entitled to 14 days of medical leave per annum, but the impact on my reputation is negative – my colleagues have pegged me as someone who is always on medical leave, using it as an excuse to stay out work.”
Then there is Ayu (not her real name). It took her more than a year to finally come clean with her former employer about her condition – mainly because she felt the need to prove that she could perform better than anyone else in spite of her condition. “Before coming out with my disorder, I was afraid that people would treat me differently. But thankfully, my employer didn’t, maybe because of my performance,” she says.
She has moved on to another job, and just like before, she hid her condition from her current employer because she was afraid of not getting the job. “It’s a vicious cycle, one that is very hard to break,” Ayu laments.
For Ooi Geok Ling, former managing director of Penang Global Tourism, hiring Kua proved to be the right decision: “I was not sure if I could find a suitable person to work at the new Tourist Information Centre that I was about to set up. He or she would have to be passionate about tourism, be good in English, sincere with people, honest with money and willing to work on weekends. As Kua entered my office assisted by a crutch, I watched her every movement. I had to see how abled or disabled she was.
“Her every movement was quite methodical – from pulling the chair out to seating herself down and resting her crutch against my desk. I had studied her resume as I would have anyone else’s and interviewed her as I would anyone applying for that position. She seemed very sincere, and I almost immediately felt that I could trust her. Her slow mobility, her knowledge of music, her articulacy in English and her preference for working weekends so that she could go to the hospital for her check-ups on weekdays ticked every box I could think of.
“Above all, she held her own as she showed no signs of self-pity or pessimism in her condition. She even proved to be a responsible person on top of all I could have hoped for. I have left Penang Global Tourism since, but ask me if I would hire her again – of course I would,” Geok Ling says.
For Ooi Chok Yan, current CEO of Penang Global Tourism, working together with differently abled people, including those living with thalassaemia, gave him a different perspective. “They want equal opportunities. They do not want to be treated differently or be given special treatment or privileges,” he says. “We match people with jobs that utilise their abilities. Janice is now handling our social media engagements, so we are using her existing proven skills and talents,” Chok Yan says.
Commenting on the current employment discrimination being faced by people living with thalassaemia, Chok Yan believes that the perception could be attributed to low public awareness. “When employers do not understand certain things, they tend to say no – it’s the easier way out. When employers understand more, the situation then might be different. I believe communication should be honest, open, and direct to manage each other’s expectations beer.”
At any one time, we are probably
healthier than anyone else around as
others may not be monitoring their
health as closely as we do. That’s why
it is very discouraging when most of us
are not in the workforce simply
because we have a blood disorder.
Kua’s honesty about her condition and the support of her employers have driven her to call on other employers to be more informed about thalassaemia. “ The more employers learn about thalassaemia, the more jobs will become available for people living with thalassaemia.
“It means people living with thalassaemia are provided with a safe space to talk about their condition with their employers, and arrangements can be made for when we need to go for blood transfusions. We don’t want to hide our condition; we want to have an honest working relationship. We can perform our jobs just like others.”
And there are others who are trying to close the gap as well: the Penang Thalassaemia Society is a charitable non-governmental organisation that helps to raise funds for the welfare and health care of both adults and children living with thalassaemia.
President of the society Noorasyikin Md Saad says, “We currently have 373 members, of which 244 are patients. We assist people living with thalassaemia in every way we can. Most of our members need a machine for their daily injections, and the machine is costly. What we do is we purchase the machines and loan them to our members. We also have members who are rather unfortunate and have developed liver cancer. The society pays for their treatment in private hospitals. We use our funds for the betterment of our affected members,” Noorasyikin says.
For her, public awareness about the discrimination faced by people living with thalassaemia is essential and must not be discouraged. “Instead of focusing on what thalassaemia is, we should focus on what thalassaemia is not – it is not an illness or a disease; it is not contagious and is not easily transmitted.
“Thalassaemia is a blood disorder, akin to high blood pressure and diabetes; people do not discriminate against those two. Despite the minor maintenance needed which they manage themselves well, thalassaemia patients are no different nor are they any less capable. They are worth investing in.”
The Penang Thalassaemia Society is organising a Food Fair on July 16 at Kompleks Penyayang. Donations are welcome. For more information, call +604 227 2133 or email penthal88@yahoo. com.
This feature first appeared in the Penang Monthly online magazine: http://bit.ly/2u4dUpz
Written by: Emilia Ismail is a freelance writer. She blogs at www.sundayyellowcardigan. blogspot.com.
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