Bengaluru: World Thalassemia Day is observed every year on 8th May to raise awareness on the growing burden of Thalassemia. Thalassemia is a genetic condition in which a defect in the protein hemoglobin reduces the transport capacity for oxygen in the blood. More than 10,000 children are born with this condition every year in India. Patients suffering from the disease can be cured with a stem cell transplant, ideally at an early age. The need for transplants in children is therefore extremely high.
Patrick Paul, CEO, DKMS BMST Foundation India, says, “It is our mission to support blood cancer, and other blood disorders such as Thalassemia patients in India, for which we have initiated DKMS-BMST Thalassemia programme. Under this programme, DKMS-BMST collaborates with local NGOs and transplantation clinics to organize camps where pediatric thalassemia patients and their siblings travelling from afar places in India to give buccal swab samples for HLA typing. Samples from the camps are analyzed in the DKMS laboratory based out of Germany and clinical matching reports of the same are provided. In cases where there is no matching sibling for a sick child, we also support unrelated donor searches for patients.”
Through this programme, so far over 4700 HLA typing have been facilitated by DKMS-BMST, in the year 2020, around 800 patients were able to find a matching donor and over 86 Thalassemia camps have been conducted since 2019 till date across India.
One of the Thalassemia survivors, 9-year-old girl Grishmitha, a resident of Kundapura, Karnataka was diagnosed with Thalassemia in 2014 and she received a stem cell transplant under Dr. Sunil Bhat at Narayana Health Bengaluru in 2017 through a DKMS donor. Her mother says, “All thanks to the donor that today my daughter is doing well. Currently she is in 3rd standard, fully recovered and is growing like any other child of her age.”
Another Thalassemia survivor is a 12-year-old boy Bibek Singh from Ludhiana, Punjab. His father says, “My son was diagnosed with Thalassemia in 2010 and had to undergo blood transfusion every 15 days, until he found a matching donor through DKMS and underwent a stem cell transplant in 2018 under Dr. Joseph John at CMC Ludhiana. Bibek is doing well and has an active lifestyle now.”
Dr. Sunil Bhat, Director and Clinical Lead, Pediatric Hematology, Oncology and Blood & Marrow Transplantation, Narayana Health, Bengaluru said, “A blood stem cell transplant is the only curative intervention available for a transfusion free status with a normal life span for Thalassemia patients. Stem cell registries like DKMS-BMST enroll adult healthy unrelated donors who consent to donate their stem cells for transplant purpose. The registries are the nerve centers of whole unrelated donor transplant process that counsel donors, enroll donors, get their HLA typing done, facilitate search of the donors and later facilitate the stem cell collection and transplant. There is need to strengthen these registries and have maximum donor recruitments.”
“Indian patients mainly require an Indian tissue match. This calls for increased awareness and need to encourage many more people in India to register as a potential blood stem cell donor,” added Patrick.
To register as a potential blood stem cell donor please visit: www.dkms-bmst.org/register
DKMS BMST Foundation India is a part of DKMS: one of the largest international blood stem cell donor centers in the world. DKMS has facilitated around 90,000 second chances at life globally. DKMS-BMST at present has over 46,000 registered potential blood stem cell donors and has given second chances at life to 33 patients in India. This number will increase considerably over the years with the aim of finding a matching donor for every patient in need.