When Vansh was born, his parents were little aware of any abnormality in his health, until he was around three months old. “He would look weak and fatigued, his face started turning a little yellowish. The doctor revealed the most heartbreaking news to us – my son was a patient of thalassemia major,” shares Bimla, Vansh’s mother.
His parents soon realised that their son’s genetic disorder has no assured cure. He has to undergo weekly blood transfusions, if not more frequently. “I was so scared. How will my little child put up with such a painstaking process?” recalls Satish, Vansh’s father.
No one has ever become poor by giving
– Anne Frank
Gradually, the procedure became an integral part of Vansh’s life as he reached his teenage years. He underwent blood transfusions for eight prolonged years. With every passing session, his hope of being cured would dwindle a little more. Yet, little did Vansh and his family know that a miracle awaits them. That Harshil, a stranger from a distant England, would save their son’s life was beyond their imagination.
Stem Cell Donation: Most Effective Cure
Vansh is one of the very few recipients of stem cell transplant in India, perhaps the most effective cure to blood-related disorders like thalassemia, leukaemia, sickle cell anaemia etc. His stem cell donor Harshil hails from England where he had registered with DKMS – an international non-profit organisation with a stem cell donor base of over 9.25 million people, dedicated to offering a second chance at life to patients with blood disorders. So far, DKMS has saved the lives of over 78,000 blood disorder patients worldwide.
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In April 2019, DKMS partnered with Bengaluru-based BMST (Bangalore Medical Services Trust) and started its operations in India. Over the years, BMST has emerged as the most trusted blood banking service in Bengaluru, if not the whole of Karnataka. Talking to Efforts For Good, DKMS-BMST CEO Patrick Paul reveals the main reason behind their expansion to India.
Need For A Stem Cell Database In India
“India has an enormous population, with a substantial percentage of children affected by blood disorders, mostly thalassemia. However, most of these children have little access to proper treatment due to lack of awareness. Stem cell transplant from a matching donor has the potential to cure thalassemia or leukaemia completely,” Patrick explains.
Till date, patients’ families in India would have had to get the transplant from donors from abroad, although the probability is higher for them to find a donor among fellow Indians.
, although the probability is higher for them to find a donor among fellow Indians. “So, DKMS wanted to create an extensive stem cell donor database in India and raise mass awareness about this concept,” adds Patrick.
Today, 33,046 people from across India have enlisted themselves as stem cell donors with DKMS-BMST and 16 of them got the chance to provide a second chance at life to patients in need, including both children and adults. Cricket maestro Rahul Dravid is also in full support of the cause.
How Stem Cell Transplant Offers A Magical Cure
Most Indians are still unaware of the existence of stem cell treatment while only a few of us have a vague idea about it.
Patrick describes the basic system, “The Human Leukocyte Antigen (HLA) gene complex in human chromosome is responsible for all functions of the immune system. Now, this specific gene system is very flexible. Any slight anomaly in any of the genes can result in major blood disorders like leukaemia, thalassemia, aplastic anaemia etc.”
“This gene complex originates in the stem cells of human bone marrow. If stem cells from a donor with similar genetic set-up are transplanted into an affected individual, it will replace his diseased stem cells. New stem cells transcend into the patient’s bone marrow and create a whole new blood system. That’s how the blood disorders can be cured,” he continues to explain.
Finding the perfect matching donor is quite difficult. The DKMS-BMST database will aid to make that task easier. “Since India is a land of multiple ethnicities and genealogical identities, a comprehensive database is more necessary than anywhere else in the world,” remarks Patrick.
Experience Of A Stem Cell Donor
Manish, a Mumbai resident had casually registered with DKMS-BMST as a stem cell donor. He realised the true worth of his action when he got a call about being a potential match for an ailing patient. “That’s when I realised that my small step can give someone another shot at life,” he exclaims.
He had received immense support from his family who believes the greatest service any human being can perform is to save another person’s life. “If that can be done by an effort as simple as being a stem cell donor, then I implore every individual to opt for it,” asserts Anup, Manish’s father.
As a donor, Manish has a crucial request for all other willing donors. “Once you have promised to go ahead with the process, do not back out. You will be taking away someone’s only hope of living again,” he urges.
“It’s In Your Blood”
The above phrase features as the slogan of DKMS-BMST to reach out to more potential donors. “Finding a genetic twin of a person in India is like looking for a needle in a haystack. We are trying our very best to make that task easier. You can be someone’s saviour too,” Patrick urges all the readers.
When a matching donor saves a patient’s life, it ends up forging a strong bond of brotherhood through blood. “Till now, all the donors have become an integral part of their respective patient’s family,” Patrick emphasises.
Thalassemia Awareness In India
DKMS-BMST is trying to popularise the breakthrough concept of stem cell transplant in India, to combat rising cases of blood disorders among newborns. At the same time, people must be sensitised that a simple blood test before marriage or pregnancy can prevent the occurrence of genetic conditions like thalassemia in children.
Thalassemia is a genetic blood disorder which manifests itself in a child if both parents are carriers of a particular genetic anomaly in their HLA system. A simple blood test can diagnose the same and warn potential parents before they conceive, and thus save a newborn’s life.
Widespread awareness needs to be generated about both prevention and cure of thalassemia. Only then the society can offer a new ray of hope to thousands of helpless children.
With the extension of the lockdown the crisis of migrant labourers and daily wagers has just grown bigger due to uncertainty and fear of future. In the migrant colonies, slums and for people in the villages hunger and desperation is building up day by day. This is high time we step up our efforts to support our people who are in dire need of food and hygiene essentials to survive the pandemic, Covid-19.
After the India-wide lockdown, a lot of jobless migrant workers are stuck in cities with hardly any resources while many started retreating back to their villages. With the loss of livelihoods, a large number of them are now struggling to support their families.
Goonj activated its pan India teams and a pan India network of partner organizations and volunteers in urban and rural India. This network, built over the last two decades, helps them learn from the ground, reach material quickly and review and adapt strategy periodically. Intensifying this network has helped Goonj reach and start work across 17produced states/UT in the last three weeks.
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Majority of the Covid-19 relief work by non profits right now is in the metros and cities but Goonj is the only non profit that is also simultaneously focusing on the people in the villages and the ones stuck on highways or somewhere.
Goonj is targeting daily wagers, migrants and other vulnerable groups, who even traditionally are left out like the disabled, sex workers, LGBTQ community.
“COVID-19 is a crisis, yes…But, it’s also an opportunity for us to build the society anew. Not ‘for’ the people…but, ‘with’ the people. And in the process, we will build ourselves too.” – Anshu Gupta, Founder-Director, Goonj.
Direct Monetary and Material Transfer
Wherever Goonj got the permission to open their centres for packing and disbursement of relief material kits, they are creating a kit consisting of 20-30 kgs material including dry rations, masks, sanitary pads and other hygiene material and reaching them to people, as per needs and as per regulations with all safety precautions. This kit will help a family survive for 30 days.
Information till 10th April 2020:
Distributed 15,100 ration kits reaching thousands of people
Reached 17,700 families
Supporting 12 community kitchen across India with 16,600kgs of ration
77,800 food packets provided to migrant laborers and daily wagers walking on the roads across the country.
Provided direct financial support to 32 organisations
In Goonj’s processing centers its trained team of women are making cloth face masks and cloth sanitary pads (MY-Pads), keeping all the precautions and with the permission and cooperation of the local authorities.
In this lock-down phase if you are facing any difficulty getting sanitary pads or you are running out of stock, here’s a detailed but very simple process of making Cloth Pads at home created by Goonj. “This is how we make Goonj MY Pads.” This is how our mothers and grandmothers turned their spare cloth into pads.
This disaster, unlike any other, is unprecedented in its scale and impact and that’s why we all must do our bit with Goonj to continue its relief work for millions of people in this still unfolding long-tailed disaster.