We call our volunteer donors “heroes” as they have all done something extraordinary to save a life. In stark contrast to our definition of heroes, we meet many people with amazing and almost superhero powers which they bring out simply to avoid us… whatever it takes to not hear our message at any cost!
In a light-hearted look at the battles we face, meet the 5 types of superheroes we meet on an (almost) daily basis…
5 – The Invisible Person
4 – Speak To The Hand
Indeed, some people use their hands to do the talking, and it’s almost as if we should take a few steps back – feeling The Force…
3 – Superhuman Focus
The eyes that can never leave the phone, the intense focus which nothing, not even a second to receive a BMDP brochure, can break.
2 – The Flash
Travelling at the speed of light, so much so that there are no way any personnel at the roadshows/ recruitment drive can catch them… at all…
1 – The Ice Queen
Gorgeous they may be but these ice queens with a heart of cold just let go of their chance to save a life. Because the coldness just doesn’t bother them anyway.
All jokes aside, don’t be sorry for us when you give us the superhero rejection … but you should perhaps take a moment to feel sorry for those patients who are denied a second chance at life. If you are reading this, then chances are you appreciate our work – so maybe stop by next time you see us and cheer us on with our work – maybe your lunch date or shopping partner would be willing to hear our story.
People may choose to avoid us, but patients can’t choose to avoid blood diseases. Something to think about…
The world is seemingly descending into chaos; countries posturing and making threats, national leaders playing with deadly new toys. They threaten not only their neighbours, but also global stability and innocent people randomly targeted in terrorist attacks.
Locally there are escalating discussions about the different racial groups in Singapore and what we need to do to sustain and further strengthen the social and cultural harmony that has been built over the last 50 years. In short, now is the time to really put the spirit in “Kampong” and make sure that every Singaporean knows the part they must play.
Through our work at the BMDP, we feel that we are truly representative of the very best in character and human spirit – we are indeed the “kampong spirit” in action. Reaching out with our story, that anyone can be struck down by a blood disease and at the same time, anyone can do something to help. We ask people to make a commitment that looks beyond boundaries and under our global mandate, the act of donation must remain one of total anonymity, without reward, payment and free of judgement. To be a bone marrow donor is to save a life – and the person in need could be just around the corner in our small island or across the globe.
Read our interview with Ustaz Tarmizi Wahid, founder of the Safinah Institute who shares his thoughts on how all Muslims in Singapore should support our cause. This is part of a series of conversations with different religious leaders to explore how doing what we consider the “right thing” resonates within their own religious teachings.
Recruiting bone marrow donors from within the Malay community has always been a challenge, and the reluctance to sign up is often attributed to worries that it may be against the Islamic faith. To explore this further, we spoke with Ustaz Tarmizi Wahid, Founder of the Safinah Institute and one of Singapore’s current generation of Islamic teachers.
Ustaz Tarmizi Wahid, Founder of the Safinah Institute
Q: Today there are concerns at many levels about the Malay community so what are your thoughts on these fears that the Malays are becoming marginalised from the rest of Singapore?
Tarmizi: Unlike our grandparents and parents’ generations, where teaching was all local and in the most part quite traditional, Singaporeans today are being exposed through more modern and diverse approaches. Also, with the rapid and vast influence of the Internet as well as through travel experiences, new ideologies are becoming more visible in the beliefs and practices of some local Muslims. As a result, Islam has become more “colourful” which sometimes includes extreme and often exclusivist forms of practicing the faith which most of us feel should not play a part in Singapore’s unique multi-cultural society.
After spending time furthering my own Islamic study overseas, I realised there was a need to help young Muslims within our own community to understand more about Islam, so they could find meaning as well as a deeper connection to the faith. To support this, I set up the Safinah Institute with the mandate to break down complex Islamic sciences and terminologies, so that everyone can appreciate the lessons and then practice with confidence and stand true to their faith.
Q: Why do you think so many people believe Islam does not allow them to be bone marrow donors?
Tarmizi: Some years ago, I was involved in the discussions around revising the HOTA (Human Organ Transplant Act). Historically, it started out with only the Malay Singaporeans being allowed to opt-in, while for everyone else it was the opt-out system. Within the first few years of HOTA being introduced, very few Malays came forward to pledge and become organ donors, and this was happening while the number of Malays in queue to receive an organ transplant were high. So upon review of the MUIS Fatwa Committee, and acknowledging the need to uphold the Islamic principle of ensuring the welfare and well-being of all, it was revised, and thus the Malays became a part of the HOTA system alongside everyone else.
Obviously, we had much discussion around this – MUIS and the various mosque and community leaders all contributed to the conversation – and we were all confident that in no way could we continue to remain out of the system. Likewise for bone marrow donation, there is absolutely no reason for a Muslim to not donate and in any event, it’s a very different proposition as bone marrow is replaced within just weeks.
Q: Some people have asked what happens if the recipient of the bone marrow is a non-Muslim, or they commit acts of sin? Am I responsible for this?
Tarmizi: There is a saying in Islam “that it is not the eye, but it is the sight; not the ear but the hearing” that will be accountable for their actions on the day of judgment. Everyone is responsible for their own decisions and a donor cannot be held to account for any harm that may be caused by the recipient of their bone marrow. This is a very limited argument and most likely a way to avoid or delay making a contribution altogether for other reasons that are unspoken. I ask the potential donors to focus instead on the positive aspect which lies in the act of giving itself.
Q: Are there any teachings within Islam that positively support the act of being a donor?
Tarmizi: There are numerous verses in the Quran and the Hadith which encourage people to go out of their way to help others who are in need and saving lives is part of this. In one we say, “it is wrong for a Muslim to go to sleep knowing his neighbour is hungry” which strongly endorses the gift that a bone marrow donor makes to a neighbour, albeit a stranger who may be half way across the world. Further Islamic teaching shares that “no one can truly believe if they do not want for their brother what they want for themselves”.
As a teacher within the Malay community, I would encourage our members to take on this noble initiative to become a bone marrow donor for no other reason than to sincerely alleviate others of their suffering. That is such a simple thing to do, and if you ever to be called up as a suitable match to a patient, then it would indeed be a reward for the donor in this life and the next.
Q: A young Malay donor recently made her donation during the month of Ramadan and some suggested this was wrong to break her fast at this time. Please share your thoughts on this.
Tarmizi: The process of donating bone marrow does not invalidate one’s fast. I applaud this young donor for her courage and selflessness for the act of giving and urge all to support anyone under similar circumstances.
As the WMDD 2017 Roving Roadshows event comes to an official closure after the last station at Marina Bay Link Mall on Friday, 29 September 2017, we would like to express our greatest appreciation to all who have helped made it a great and successful event!!!
Have you ever wondered what happens to the completed forms and buccal (cheek) swabs collected at BMDP recruitment drives and roadshows? Do we play pick-up sticks or fold paper cranes with them? No! They fall into the hands of our amazing CHECK-TEAM – a proud mother (Marsita), a gym enthusiast (Mira) and a foodie (Eva).
We are not suggesting for you to check them out (though no laws against that), but because their job is all about checking, checking and more checking. So much so that they developed that a keen eye for spotting errors.
From left to right: Mira, Marsita, Eva
When not mothering, gym-ing or cooking, they ensure the timely and accurate updating of the BMDP register working in a production line to first process the completed forms by checking and keying the information into the system. The swabs are barcoded, checked and then shipped to the United States (US) in batches of four hundred for lab testing, without the forms to ensure confidentiality. Once the data comes back from the lab, approximately 4-6 weeks later, the team will then check and enter the lab results into the system, using the barcodes as unique identifiers. You will then receive a welcome email from us, thanking you for joining BMDP as a volunteer bone marrow donor.
Sounds tedious? All these processes and checks ensure accuracy as well as confidentiality (personal data protection) of our donors. Now you understand why it takes a while before a person can be added the registry as a volunteer bone marrow donor.
|Did you know?|
The team processed a total of approximately 34,000 forms and swabs since the start of our recruitment campaigns two years ago – Project Tomorrow and Match for Life. That’s more than 1,000 forms and swabs to process per month!!! Adding to the pressure, they cannot afford any mistakes as it will affect the operational processes downstream for the Search and Selection Team and Donor Centre.
Disclaimer: No consent forms were harmed during the photoshoot
“The team can build up so much momentum processing the forms and swabs that we have an amazing adrenaline rush going!” Mira said, but further added that “the momentum can be frequently broken with erroneous forms…”.
Unfortunately, many forms arrive with errors and missing data and quite often the team get an earful when clarifying information with potential donors over the phone. As much as it pains the team to reject any potential volunteer donors, erroneous or incomplete forms that are not rectified must be rejected. With the challenging odds, 1 in 20,000, of finding a match, every rejection means another potential match lost for patients needing a bone marrow transplant.
“It is all about the teamwork, when there is an error, it is not one person’s responsibility, but the team’s, because we have each other’s back” Eva said.
The trust is undeniable from the looks on the faces
Kudos to the team for their efforts and endurance! Please help make their work easier by encouraging people to not just sign up to be a volunteer donor, but to fill up the complete form as accurately as possible (before being distracted by the gorgeous ladies)!
Each year, Malay patients seeking a bone morrow donation are robbed of their final chance at life because they cannot find a matching donor.
Chances of finding a bone marrow match outside one’s family are only 1 in 20,000, and it is most likely this match will come from within one’s own ethnic group. With only 8% of the total number of donors registered with the Bone Marrow Donor Programme (BMDP) from the Malay community, it is nearly impossible for Malay patients to find their life-saving donor.
Earlier this year, one leukemia patient found that 1 in 20,000 match in Noor Syafizah Bte Mahadi, who joined the BMDP register in 2014.
Syafizah chose to take the action to save a life
This generous young woman signed up after watching BMDP donor testimonies at her school. “I thought how amazing it must feel to be able to help save someone’s life,” she said.
Three years later, at age 20, she received a call notifying her that she was found as a match for someone in need—someone who would likely die without her help. She was preparing for her exams at the time and the donation was likely to be scheduled during Ramadan, a significant religious annual observance regarded as one of the Five Pillars of Islam.
“I was very surprised…I didn’t expect to be a donor because the possibility was only 1 in 20,000. What are the chances, right?” Syafizah said.
Despite having some anxieties about the procedure, it didn’t take her long to commit and make the lifesaving donation. “My friends were all very supportive – telling me to go for it. It’s rare to get the opportunity to save a life, so when it comes along, you have to take it,” said Syafizah.
Syafizah’s parents were also very supportive, despite being initially worried for their daughter. Like most people they weren’t familiar with bone morrow donation, and were concerned about possible long-term side-effects. Only after learning the fact that donors will recover 3-4 weeks after the simple procedure, they realised their fears were misguided. They encouraged their daughter to go through with the donation, knowing it was perfectly safe with no long-term side-effects.
Syafizah with her supportive parents
“We were shocked when she first told us”, said Mahadi Daonher, Syafizah’s dad. “When we learned more about it, our minds were put at ease, knowing our daughter was in safe hands and the procedure was straightforward, painless and with no long-term side-effects.
“We are extremely proud of our daughter. We believe it’s important to do what you can to help people, and this is what she did and we want to encourage other Malay parents to support their family members who are considering becoming a donor so other lives can be saved.”
Unfortunately, the Malay Muslim community is not always so supportive, not only because of misconceptions about the risks, but also due to concerns that donating bone marrow may be against the principles of Islam. This led to the serious underrepresentation of Malays on the bone morrow donor register.
However, many in the Malay Muslim community have commended Syafizah for her generosity, including Ustaz Tarmizi Wahid, founder of the Safinah Institute – a centre for Islamic education in Singapore.
“There’s nothing in the bone marrow donation process that goes against any of the principles of Islam. In fact, it’s quite the opposite. There are numerous verses in the Quran and Islamic tradition that encourage people to go out of their way to help people in need and save lives,” he said. He also noted that Syafizah should be seen as an inspiration for young people and Muslims alike to join BMDP’s register.
On September 16, World Marrow Donor Day, Syafizah was featured in the Straits Times, calling for more members of minority races to step up and join Singapore’s only bone marrow donor register.
“All it takes to join the register is a simple cheek swab. From there, you have the chance to be a life saver, said Syafizah.
“I was surprised at how painless and smooth the entire process was, she added. My parents were with me the whole time and I felt very well taken care of.
“I feel very grateful to have been able to do this for someone and always pray that the person I donated to is recovering well and goes on to have a good life and do good things.”
Every person facing a blood disease and in need of a bone marrow transplant deserves a chance at life. Having more Malays on the donor list means more lives can be saved and it all comes down to the simple act of registering.
We are making it bigger and better this year as we rove the office buildings in Singapore during September, in conjunction with World Marrow Donor Day 2017!
|13 September 2017||Ocean Financial Centre (Keppel Reit)|
|14 – 15 September 2017||Mediacorp Campus|
|20 September 2017||Citibank Changi Business Park|
|20 – 22 September 2017||Asia Square (The Cube)|
|27 – 29 September 2017||Marina Bay Link Mall|
Do visit us if you’re round the corner, or better yet! Sign up as a volunteer for us by clicking here.
In the modern re-telling of an ancient Chinese proverb “three men make a tiger” (三人成虎), bone marrow donation is often ridiculed with untrue negative connotations, which are further reinforced as the universal truth through word of mouth by the misinformed public. In our line of work, we are often heartbroken when patients struck with blood diseases are denied the second chance to live because myths and misconceptions influence potential donors to not go through with the donation process. Below are two such heart-wrenching cases…
Peter (not real name) lives with his humble condominium cleaner parents in a one-room rental HDB apartment, while his siblings stay with their grandparents. The family was devastated when Peter was diagnosed with Acute Undifferentiated Leukaemia at age 17 and there were no matching donors among his siblings or on the BMDP registry. Fortunately, both Peter’s parents were found to be suitable haplocompatible* (partially matching) donors for their son! Though not the ideal donor, they are Peter’s last and only chance of survival.
Not willing to listen to the doctor’s assurance, Peter’s father could not overcome his totally irrational fear that donating bone marrow for his son would cost him his own life. With time running out, love conquered all when Peter’s mother decided to overcome any doubts that she may have and donate her bone marrow to her son. Peter is now on the road to recovery.
In another case, Ahmad (also not real name), diagnosed with Acute Lymphoblastic Leukaemia in 2010, was not as fortunate. Facing impending death, he thought he had a chance of a cure in the form of a matching bone marrow donor. However, after initially agreeing to the procedure, the donor backed out of the donation as she mistakenly believed donating bone marrow would mean not being able to conceive in the future. Even worse, she thought that the process might kill her. With such deep misplaced belief and no other matching donors to help, Ahmad eventually succumbed to his illness and passed away after four painful years of hopeless treatment. Ahmad was just 20 years old.
Believing in misconceptions can be useful to avoid discomforts and we tend to hide behind them, but do people seriously think that BMDP would be allowed to harm or bring harm to anyone knowingly? Truth be told, all donors undergo a very strict medical examination so we know they are absolutely fit and well and none of them suffer any long-term side effects. On the subject of fertility, young donors go on to become parents and a few of them even went on to have their third or fourth baby after donating.
When ignorance prevails, unwilling donors inevitably and unnecessarily cause the loss of precious lives even if they do not intend to. That is why the BMDP relentlessly seeks to educate the public on the truth about bone marrow donation, much like Chief John Anderton (Tom Cruise) in the movie Minority Report preventing murders before the act – and this is how BMDP takes the murderers out of people!
*Biological parents can never be a histocompatible (full matching) donor to their children as they inherit half of their genes from each parent.
Many of our donors have to grapple with friends and relatives bombarding them with endless nonsense and old-wives’ tales about the horrors of being a bone marrow donor and especially no more babies after that. No disrespect, Grandma! but you could not be more wrong… and what’s more, we got the proof. Not to mention, this is Singapore and there is no way we would be allowed to even operate if we knowingly set out to reduce the nation’s already frugal fertility rate. On the contrary, our heroes might be deemed irresistible by their partners, that making babies can be a possible side effect of bone marrow donation… if you get what we mean!
On that note, meet Shalini and Wilson, both perfect examples of how bone marrow donation is not going to stop anybody from having children.
Shalini Nair donated her bone marrow via the Peripheral Blood Stem Cell (PBSC) collection method when she was 26 years old (read her story here). Fast forward 6 years, Shalini and her husband are preparing for a new addition to the family any moment now proving beyond a doubt that bone marrow donors have babies!
Looking back, she was never bothered by the myths and misconceptions. Not wanting to be misinformed, she researched online and found the process of bone marrow donation to be simple, with no long-term side effects and absolutely no problems associated with fertility issues.
Another advocate for bone marrow donation is Wilson Quek, who donated his bone marrow via the bone marrow collection method in 2013 (read his story here). Already a busy father with two young children, and a third one due very close to his scheduled donation date, Wilson jumped at the opportunity to save a life without a second thought. Obviously his wife was pleased with her home hero and they went on to produce another baby boy just months after his life-saving donation… so not only a great role model to other potential donors, but a hero to the nation as well!
“it’s such a meaningful thing to be able to save someone’s life and now that I have the chance, I should definitely go ahead and do it.”
Our promise is to find a donor for every patient in need of a transplant and to do that, we really need all the help we can get with more people signing up as volunteer bone marrow donors. There is indeed nothing greater than giving someone else a second chance at life and for all you know, you might be bestowed with a miracle in the form of a little bundle of joy.
For three years, students from Victoria Junior College worked with the BMDP to spread the word about our life-saving cause and help us recruit more donors. They learned that blood diseases can strike anyone at any time and that leukaemia and lymphoma are not lifestyle diseases caused by the patient’s behaviour. Nonetheless, it was still a huge shock when one of their schoolmates was diagnosed with leukaemia. When chemotherapy failed to stop the very aggressive spread of the cancer cells, a bone marrow transplant – something they had all learned about from the BMDP – was her last and ONLY chance at survival.
Fortunately the BMDP was able to find a matching bone marrow donor for this young student and we hope that life will resume after her treatment. For her classmates, it showed how a disaster can be averted with advance planning.
Fired up by this close encounter and a real-life lesson that bad things do happen to absolutely anyone, the student leaders campaigned passionately for the BMDP, forming the “International Awareness” Club. The leaders engaged the students through a campus-wide game to illustrate the helplessness and difficulties that patients often face when searching for a matching bone marrow donor and of course, continued their drive to get more donors signed up.
“Through this whole experience, our team fully understood the challenges and that it is really an uphill task to find a match. We are proud to have played our part in helping our schoolmate and also other people in the future who may need find a match”, said one of the student leaders.
While many of the second year Victorians had already signed up last year, the campus donor drive was still a huge success and 309 new bone marrow donors were recruited during the 2 days drive in school.
Way to go Victorians!
Why don’t people sign up as bone marrow donors? For some, it’s just that they are too lazy or they didn’t see us anywhere convenient – but the main reason(s) are still the myths and misconceptions that abound. “It can make you weak!”, “You won’t have babies after that!”, “You lose part of yourself – forever!” are some that we have heard.
SERIOUSLY!!! We live in Singapore!! How can anyone believe the BMDP would be allowed to get away with anything that is harmful? That’s why we keep reinforcing the message and work hard to educate the masses on the REAL TRUTH.
Every week the BMDP is out with our mobile exhibition – in the Malls, Libraries, Hospitals and Schools – giving people a chance to ask questions and most importantly take that crucial step to sign up. Adding more depth to our story, the exhibition includes a new interactive display table which takes the viewer through the entire journey from stories about our patients to debunking the myths and sharing the donor’s experience.
Please go try it out when you see it at our next public event and share your thoughts. After all, it’s everybody’s business and together we are committed to giving everyone that precious last chance.
Below are the dates of our upcoming exhibitions –
|3 – 9 Jul||Hougang 1|
|10 – 16 Jul||Vivo City|
|15 – 30 Jul||Ang Mo Kio Merchant Fair|
|12 – 20 Aug||Chinatown Point|
|16 – 22 Oct||One KM Mall|
|1 – 7 Dec||Chua Chu Kang Public Library|
|8 – 14 Dec||Ang Mo Kio Public Library|
|15 – 21 Dec||Cheng San Public Library|