With over 4.2 million followers across all social media platforms, Abhiraj and Niyati, better known as Abhi and Niyu, (Forbes 30 Under 30, 2021) are popular content creators who are famous for their series #100ReasonsToLoveIndia where they travelled across India to find 100 heartwarming stories of change, positivity, and inspiration across India.
Their first video that went viral was a video urging people to look for alternatives to polluting POP and paint Ganesh idols. Since then, their well-researched videos have been shared on social media, even by celebrities.
During the National Cancer Awareness Day on November 7, the duo released a video on YouTube and discussed the incredible solution to blood cancer in just a click and without spending a single penny. The video got more than 1 million views and inspired 25,000 people to register as STEM cell donors.
As the country was going through the devastating second wave of COVID-19 in April and May 2021, Abhi and Niyu were part of various groups that matched plasma donors and helped find hospital beds and other requirements for the needy. During this process, they were contacted by a patient named Vipul who was fighting blood cancer.
Initially, the two thought that the patient needed blood as they were getting a lot of requests from Thalassemia patients who could not get regular blood. But it turned out to be something much more important.
The patient guided them through the lack of a STEM cell database in India and how DKMS - an international non-profit is helping the government create one by sending free swab tests to volunteer people.
"And we thought yes, spreading information about this is extremely crucial for our country," the duo told The Logical Indian.
"As content creators, we thrive on making India better. We have the privilege of a huge audience and many of them have noble intentions. What they lack is knowledge on how to act on them. If we can guide them regarding systemic change through our efforts, we feel it would be the best use of our platform," they said.
However, the two did not expect such an incredible response as people tend to run away from morbid topics such as cancer. "It was a delightful surprise that not only the video crossed a million views on all major platforms (YouTube, Instagram, Facebook) but also more than 25,000 eligible people have registered as donors since the release of the video. The number is growing day by day," the influencers shared.
Stem cells are the body's raw materials cells from which all other cells with specialised functions are generated. Under the right conditions in the body or a laboratory, stem cells divide to form more cells called daughter cells. No other cell in the body has the natural ability to generate new cell types. Stem cells represent an exciting area of medicine due to their potential to regenerate and repair damaged tissue. Some current therapies, such as bone marrow transplantation, already use stem cells and their potential for the regeneration of damaged tissues.
The initial process to get registered as a donor is simpler than one might think.
A person who wants to donate needs to answer a few simple questions to make sure he/she is eligible to donate if needed. If it's a yes, then he/she will be directed to a page where one can request a swab kit online.
Secondly, a donor needs to swab the inside cheeks and send the swabs back to DKMS (there are instructions on the envelope that will be sent). The swabs will then be analysed in the lab to determine a donor's HLA (tissue) characteristics this is how donors and patients are matched.
Once the samples are analysed, a donor is added to the registry and will be available for patients worldwide who are searching for a donor.
If a donor comes up as a potential match for someone, the donation process can begin. The team will be in touch as soon as possible.
DKMS-BMST will contact the donor and ask to provide a blood sample for further testing. If the results confirm that a person is a suitable donor, then the stem cells can be donated.
Peripheral blood stem cell collection is safe and commonly used donation method today. Before the blood stem cell collection, the donor receives a daily injection of G-CSF for five consecutive days, to mobilise and build up the number of stem cells in the circulating bloodstream.
The collected blood stem cells are transplanted to the patient, in a procedure similar to a blood transfusion.
The job is done and the incredible donation will help to give someone a second chance at life.
Abhi and Niyu believe that on-ground drives by college organisations and even corporates can play a considerable role to educate people, as there is a lot of misinformation related to the topic.
They stressed that if the Ministry of Health or the State Health Departments take up this cause, then it is possible to have swab testings in every government hospital. As such, since DKMS bears the cost of the test and the swab kit, the government only needs to administer the tests to people and ensure it gets sent.
"When we spoke to Vipul, he did not seek any financial help. He sought out help to reach the masses not only for his own good, but for the betterment of millions who suffer from blood cancer and blood related diseases in the country. The initiative by DKMS is not a bandage that momentarily delays the problem but a systemic change. Vipul inspired us because he wanted to change the status quo without expecting anything in return," the Mumbai-based couple shared.
"A person's HLA typing needs to match 100% for a donation to take place. So his idea was that even if this process doesn't result in a match for him, it will help someone in the future find their match courtesy of a bigger database," they said.
The samples collected through the SWAB test go to Germany for testing. There is a delay of at least 40 days before a person can find out their HLA typing and register as a donor in the database.
In the future, anyone with blood cancer can approach DKMS and check if they have their HLA typing on file. Most importantly, doing this test allows a person to have his/her HLA Typing in hand. Therefore, it saves the time one would otherwise spend identifying the HLA type. So the benefit of registering itself is two fold. If people get access to stem cells faster within the country, they have a higher chance of getting treatment on time. This entire process will cut down the waiting time for patients. When it comes to a disease like cancer, this wait time is what can often be fatal.
However, there are many misconceptions involved regarding the stem cell donation process. People often confuse it with the painful procedure of a bone marrow transplant, which was the only way of stem cell donation in early times. Nowadays, with peripheral stem cell donation, the process (for the donor) can be as simple as donating Plasma (as many did during the second wave of COVID-19).
The second misconception is that a person's HLA Typing is the same as blood group. Blood groups can be matched on different levels. For instance, O positive is a universal donor. But it is not the same way for HLA Typing. There are 10,000 unique types and the match needs to be 100% for there to be a donation. As there are 10,000 types, finding a match is like finding a needle in a haystack.
For Abhi and Niyu, making a video is the start of the journey and not a destination. They plan to share the initiative with health officials, local MLAs, and MPs once they see the success of donor registrations. "If we can seek help from authorities regarding awareness of the same - we can reach the masses and make a deeper impact," the two said.
To register as a donor, visit: https://www.dkms-bmst.org/get-involved/become-a-donor
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