Kick-starting a campaign to swab more South Asians
In 2014, Thilesa Varathan's life changed drastically. One day, she was a 23-year-old student at Concordia University. The next day, she was diagnosed with acute myeloid leukemia. When Thilesa's cancer treatment and medication failed to work, it was clear her only chance of survival was a stem cell transplant. When over 70% of stem cell donors are white, Thilesa's likelihood of finding a match, as someone of Tamil descent, is exceptionally slim. Therefore, when Thilesa's doctors could not find a match for her, her close friends, Shaini Saravanamuthu and Gowsic Thevendran, took matters into their own hands. Shaini and Gowsic knew the only way to find Thilesa's match was to reach out to South Asians directly, so that's exactly what they did.
The Campaign Goes International
Friends Through Thick and Thin
Shaini tells us that even though the immediate aim of the campaign was to save Thilesa, the overall initiative was to diversify the stem cell registries and potentially save the lives of other South Asians in need of stem cell transplants. Shaini and Gowsic developed Thilesa's online presence by creating Facebook pages, Instagram accounts, and circulating articles about her on various sites. The duo also reached out to student groups at universities all over Canada. Shaini remarks, "it was so inspiring to see strangers sign up. Many students at the University of Toronto got swabbed...and it was touching to see South Asians around the world, mostly in the UK, register for Thilesa."
Calling All South Asians
A United Community
Shaini and Gowsic noticed many people did not realize how hard it is to find a stem cell match. They met several people during the campaign who argued they did not need to register because someone else in the Tamil community was bound to do so and would be Thilesa's match. Shaini and Gowsic were shocked by this misinformation and made a concerted effort to correct people whenever possible. When specialists look for a patient's match, they compare that patient’s DNA with a donor’s DNA. Patients and donors with the same ethnic background will most likely have similar DNA, increasing the likelihood of them being a match. Thilesa was essentially searching for her genetic twin and had a higher chance of finding her match amongst South Asian donors, especially if they were Tamil. Shaini says, "once people understand how rare it is to find a match...they will realize how important it is to donate."
We’re In This Together
In Memory of Thilesa
Even though hundreds of South Asian and Tamil people got swabbed to save Thilesa's life, not a single one of them was Thilesa's match. On April 2, 2015, Thilesa passed away. She fought a gruelling fight against cancer and eventually lost because, as a South Asian, the odds of survival were never in her favor. Shaini points out that "by the time a patient's match becomes a registered donor, it is usually too late to save someone who is dying right now." Ideally, the patient in search of a match should have a match in the registry before they need it. Shaini and Gowsic were heartbroken when Thilesa died. Still, they view her story and the initiative to save her life as a wake-up call for people of underrepresented ethnic groups to join stem cell registries. As Gowsic puts it, "if donating stem cells were on par with donating blood, Thilesa would not have been in this situation. Only then can we protect our friends, families, and communities of all ethnicities."