Yohan, a three-year-old boy from Mysuru, suffering from Thalassemia major, is in urgent need of a blood stem cell transplant from a matching donor to get treated for the blood disorder.
DKMS BMST Foundation India, a non-profit organisation dedicated to the fight against blood cancer and blood disorders, has stepped in to coordinate the search to find a matching donor for Yohan, by conducting a virtual drive where volunteers in the age group of 18-50 can register online to be potential lifesavers.
Inherited disorder
Thalassemia is an inherited blood disorder characterised by less oxygen-carrying protein (haemoglobin) and fewer red blood cells in the body than normal.
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Yohan was nine-months-old when he was diagnosed with thalassemia major. Now almost three years later, Yohan is still undergoing frequent blood transfusions along with chelation therapy. However, doctors have advised that a blood stem cell transplant would be the best long-term course of treatment. Following this, Yohan’s parents have appealed to donors from across the country to register online so that the child can be saved from further complications. People can register on dkms-bmst.org/Yohan
Sunil Bhat, Director and Clinical Lead, Paediatric Haematology, Oncology and Blood and Marrow Transplantation at Mazumdar Shaw Cancer Centre, Narayana Health City in Bengaluru, who is treating the boy, told The Hindu that those with thalassemia have to undergo regular blood transfusions. Additionally, they have to be on regular iron chelation therapy to remove the excess iron from the body. The excess iron that accumulates in the body owing to frequent blood transfusions can affect vital organs leading to complications.
“While stem cell transplant is the best option, finding a matching donor and affordability are the major challenges. Only 25% of persons with thalassemia have a donor in the family,” the doctor said.
“While over 10,000 children are being diagnosed with thalassemia each year, only 0.04% of the Indian population is registered as potential blood stem cell donors. So it becomes harder for patients like Yohan to find a perfect match. It is crucial for more Indians to register so that more and more patients of blood cancer and other blood disorders can get a second chance at life,” he said.
Registration process
Eligible donors can register by filling an online form after which they will receive a DIY swab kit at home. “Once the swab kit is received, the donor has to fill out the consent form and take a tissue sample from inside the cheeks with three cotton swabs provided in the kit. Then they should send the sample in the pre-paid envelope provided,” the doctor explained.
Pointing out that virtual registrations have become common during the pandemic, Dr. Bhat said: “The DKMS laboratory will then analyse the tissue type and the details will be available in the global search for blood stem cell donors. The organisation will get in touch with a suitable donor and collect blood stem cells. This is similar to a blood donation but here only your stem cells are taken. This is a safe, non-surgical outpatient procedure,” the doctor added.
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