After a nine-year-search for a donor, city-based Karamchedus found a bone marrow match in a 21-year-old in Kerala for their daughter who was born with thalassemia.
Now, two years after the girl Manasvi has been cured of the condition, widely believed to be incurable, her parents are working on spreading the word. They want to get more people involved as the odds of finding a perfect HLA (human leukocyte antigen) match are small at present, due to a small donor pool.
“A lot of people, including medical professionals, are not aware that stem cell transplants can possibly cure thalassemia. A bone marrow transplant does away with the need for transfusions and iron therapies which thalassemia patients have to undergo regularly,” said Kiran Kumar Karamchedu, Manasvi’s father.
After seeing his daughter’s life change for good, Mr. Karamchedu, who is on the board of Telangana’s Sickle Cell and Thalassemia Society, also started volunteering with a Chennai-based NGO to increase the donor pool for patients in the Telugu states. According to Sonali Ashok, a consultant heamotologist at KIMS Hospitals, a transplant is the only known cure currently for thalassemia. Patients should, however, only undergo the procedure after fully understanding the risks and benefits, she said.
“With improvements in techniques and greater possibility of finding a match, more patients are opting for the procedure. The best match is often found in a sibling but with growing donor registries, even unrelated donors can donate,” said Dr. Ashok.
She also emphasised that thalassemia can be prevented before birth if families and couples undergo screening.
Bone marrow transplants are commonly being done with peripheral blood stem cells, obtained through a blood donation procedure similar to platelet donation. Sometimes, the marrow from a donor is also extracted from the hip bone. The stems cells transplanted help a recipient to produce normally functional red blood cells, as against the iron-deprived red blood cells due to thalassemia. Transplants are mainly considered for young patients.
At present, the high cost of a bone marrow replacement procedure is the biggest deterrent, but Mr. Karamchedu says finding a matching donor can be a bigger concern for patients. Fundraisers through non-governmental organisations, and also with State government helping patients through their CM’s Relief Fund, cost is a lesser concern, he says.
“All it takes is a saliva swab from the cheek to know whether somebody is a match or not,” he adds.
