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Rediff.com  » Getahead » Can You SAVE This Mother's Life?

Can You SAVE This Mother's Life?

By DIVYA NAIR
Last updated on: August 02, 2022 14:25 IST
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Currently, stem cell transplant is the only lifesaving cure for lakhs of Indians living both in India and abroad suffering from leukaemia, Thalassemia and severe blood disorders.
However, finding a donor when you are racing against time is perhaps the greatest roadblock that needs to be addressed.
"Each one of you is the cure," says Melissa who has acute myeloid leukaemia and wants young people to step up and donate to the cause before it's too late.
Read on to find out how a kind heart and a few hours of your life can save the life of another Indian fighting for her life.

Melissa Nazareth is looking for a donor

IMAGE: In June 2021, Melissa Nazareth was diagnosed with acute myeloid leukaemia. She is currently undergoing treatment for blood cancer in Singapore and needs a matched stem cell donor for a transplant. Photograph: Kind courtesy Melissa Nazareth

Last year when Pune-born Singapore resident Melissa Nazareth visited the city hospital to deal with what seemed like a minor cyst "the size of a pea" in her abdomen area, she was expecting to get it surgically removed and be back home in a few hours.

Instead the 50-year-old mum and head of human resources APAC was diagnosed with acute myeloid leukaemia (a rare type of blood and bone marrow cancer affecting healthy white blood cells) and within minutes her life as she knew it had turned upside down.

After four cycles of chemotherapy followed by remission and a battery of tests, when her WBC (white blood cells) count kept dropping to dismal amounts, in December 2021 experts discovered mutations in blood cells and offered the last ray of hope: A bone marrow transplant.

"It was an eye opener for me. One moment, I believed I was living this happy, perfect life and the next moment, I was running between hospitals and medical experts trying to find a cure, a donor who can save my life," Melissa tells Rediff.com's Divya Nair over a telephonic call from Singapore where she is employed.

In fact, last year Melissa celebrated with her family -- her 7-year-old son and husband -- what she hated to believe might be the last happy Christmas together.

However, Melissa was lucky that her doctor in Singapore found a temporary cure -- an FDA approved oral drug that could buy her some time and provide temporary relief. The long-term fix was to find a healthy donor and get the transplant done at the earliest.

Two months after her doctor checked for a match through the World Wide Donor Association (WWDA) -- the global registry for patients looking for a match -- Melissa had no clue why the process was taking so much time.

To help Melissa, a friend directly contacted Chennai-based DATRI, one of India's largest unrelated blood stem cell donor registries with the highest probability of finding a donor match.

And what are the odds?

In a country where 13 lakh Indians are diagnosed with cancer every year, patients like Melissa who are looking for potential stem-cell donors realise that over 75% are unsuccessful in finding a full match among their blood relatives and have to look for unrelated matches from fellow Indians who may have signed up in a limited global registry.

Stem cell donor Harish was a match for a 3 year old kid

IMAGE: 'I signed up with DATRI at Sastra University, Thanjavur, Tamil Nadu in 2017. Initially, it was just a simple cheek swab and filling a form. After four years, I got a call from DATRI that I was found to be a potential blood stem cell donor match for a 3-year-old kid. I happily donated my blood stem cells to the little kid who was suffering from a fatal blood disorder,' says Harish.
Photograph: Kind courtesy DATRI

According to Gayathri Shenoy, head of patient relations at DATRI, which has a registry of about 500,000 stem cell donors, "For a successful transplant, the HLA match between the donor and recipient has to be a close match. And there is only a 25% chance that you would match with someone from your family or close relatives."

In the case of stem cell donors, ethnicity plays a huge differentiating role. Unlike Americans, Caucasians, Indians are the worst affected also because the total pool of donors is comparatively less and the possibility of matching with a stranger is only 1 in 100,000.

Even in developed nations like the USA, UK, Canada and Singapore, the chances of Indians finding a donor is frighteningly low.

"Indians not finding a stem cell match is a global problem. Every country has its own registry. But because of our ethnicity, the odds are already stacked against us. The fraction of Indians in any registry across the world is too small," Gayathri says while emphasising the need to raise awareness to improve the database.

And at any given point of time, there are at least 2,000 people in extremely critical conditions waiting to find a match every day, further slimming your chances.

"It's frightening but sometimes the waiting period is so long that before the patient find a match, the cancer or disease may get the better of him/her. In which case, the only solution is to register as many donors as possible so that when there is a patient looking for a match, one is found immediately," says Gayathri.

Not just adults, the patient list includes children as young as 3 months old who are diagnosed with blood disorders and desperately require stem cells for surgery/transplant to save their lives.

In India, despite the awareness patients with leukemia, thalassemia, aplastic anemia and those with inherited blood disorders are still on the rise.

While radiation, chemotherapy and even stem cell surgery may seem like magical cures for the above life-threatening conditions, the truth also remains that the cost of diagnosis and treatment is unaffordable to a vast majority of Indians from lower middle class and underprivileged families.

But that hasn't robbed them from hoping for a medical miracle -- a healthy stranger who is willing to spare a few hours hoping to match with someone (any Indian residing anywhere in the world) in need and save a life.

In the last 13 years DATRI has been trying to build awareness and clear misconceptions about donor risks, and increase the number of donors in its registry so it can serve and reach out to more deserving patients.

"Each one of you is the cure," says Melissa who has been organising awareness campaigns through corporates and well-wishers to get more people to sign up. "After going through this ordeal, I have realised I do not want anyone else to go through the same pain. Sign up today because you never know when you or someone you love might need your help."

"We successfully completed our 1,000th donation on the 30th of July," says Gayathri who insists that a successful donation means a gift to life.

Anyone aged between 18 to 50 years residing anywhere in India can become a part of this registry by filling out a form and submitting a cheek swab which is sent to a lab for testing.

"You need five minutes to fill the form, two-three hours to get your health check-up done and evaluate if you are fit to be a donor. If you qualify, you will need to visit a listed hospital in your city as directed by our team and spare 3 to 4 hours to donate your stem cells. After that you can go home, to your college, or place of work without any side-effects."

Only about 300-350 ml of donor blood stem cells is required to save a life.

However, unlike blood donation, finding a stem cell donor is not at all easy.

According to Gayathri, a major concern among potential donors is a lack of awareness.

When you hear stem cell or bone marrow, a scary image of a needle piercing your hip and collecting a sample is what comes to mind.

Clearing the myth, Gayathri explains, "In 80 per cent cases, peripheral blood stem cell donation is preferred or recommended. It's a painless, non-surgical procedure called apheresis, similar to platelet donation. Unlike in blood donation where it takes longer to produce and replenish, a few days before the stem cell donation you will be injected with a shot of injection (with your consent) which will ensure your stem cells are replenished with zero effort."

The entire procedure -- from registration to donation -- is completed in less than a cumulative of 10 hours (spread across several days). But those 10 hours can save one life and like in most cases, the life of the entire family that maybe depended on this person's survival.

Please watch the video below to understand how you can register for donation and save a life:

 

In a private lab, the approximate cost of the HLA test would come to Rs 15,000 per donor. However, since DATRI is an NGO, the registration kit is offered at a discounted rate of Rs 1,800.

In the case of Melissa whose treatment expenses are borne by the insurance company, the waiting time is nothing short of a ticking bomb.

When you register with an NGO like DATRI which is funded by corporates and donations, the wait period is 45 days -- after you send a buccal swab, it is sent to a laboratory for testing to check if you are a match.

"Not everyone can afford to wait that long," says Melissa for whom age is another determining factor.

"I am 50 so some of my friends and acquaintances who are the same age as mine may not be healthy enough to qualify as a donor. So I am simultaneously paying for the private lab tests for my cousins and relatives in India and elsewhere to speed up the process. But it's the call to action that really matters," she says.

"It's been a little over two weeks since I started campaigning for myself. Among the 10 people I call and speak to every day, only a few sign up immediately and even if they do, the chances of them being a match for me are still bleak. But I am positive and I cannot stop trying," she adds.

"Miracles happen each day. If not for me, I am at least hoping one of these donors match with someone equally deserving and ultimately gets treated on time."

According to DATRI, once you register and sign the consent form, the process is completely confidential.

"The donor doesn't know who the recipient is and vice versa. This is done to avoid conflict of interest, eliminate exchange of money, unfair practices causing disadvantage or inconvenience to either party."

At the end of one year, however, if both parties -- donor and recipient -- intend to know or meet each other the interaction is enabled through mutual consent.

Recalling one of their successful donor-recipient encounters in 2016 in Bengaluru, Gayathri reveals how the moment was a subtle reminder of hope, kindness and joy.

In May 2016, Fateh Singh, then 6 (now 11), a thalassemia patient from Amritsar, underwent a bone marrow transplant. In May 2017, he met his 28-yea- old donor and saviour, Naval Chaudhary from Bengaluru.

"It was the first successful unrelated bone marrow transplant in the country and the duo met on Thalassemia Day 2017 so it was a special moment," Gayathri says with equal pride and hope while appealing to young Indians to come forward and sign up.

"As a donor, you may think you are saving one life. But you touch the lives of the entire family and community associated with the person. And it only cost you a few hours of your life," appeals Gayathri.

And for some reason if you are not able to donate due to age or health restrictions, you can still help by raising awareness, organise campaigns and drives or simply donate a sum anonymously to the cause.

To register with DATRI as a potential donor for Melissa, and thousands of Indians looking for a match, please click on this link: https://datri.org/you-may-be-melissa-nazareths-lifesaver/

For more details, you can reach out to Gayathri Shenoy on gayathri.s@datri.org

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DIVYA NAIR / Rediff.com