Thalassemia genes are 1% to 3% in South India, 3% to 15% in North India, and 10 to 15% in Gujarat

16788994_216090452190336_3561609889430110208_nThalassemia Day falls on 8th May. Blood Stem Cell donation awareness is important to help Thalassemia patients. A note by Chennai-based blood stem cell registry DATRI on the occasion:

World Thalassemia Day, is a global initiative to raise public awareness about the health condition of thalassemia patients. The day falls on 8th May, every year.

In India, every year around 10,000 infants are born with thalassemia and the carrier rate for thalassemia gene are 1% to 3% in South India and 3% to 15% in North India. According to a report, Gujarat State has the highest frequency of beta-Thalassemia trait in India, with 10 to 15%. The Red Cross Society, Prathama Blood Centre supports 2,779 thalassemia children out of which, 1,200 are thalassemia patients in Ahmedabad alone.

Thalassemia is a lethal disorder where the affected children cannot survive without regular blood transfusions. But this process gradually leads to the accumulation of iron in the body, and if left untreated it causes multi-organ diseases and premature death. Even though thalassemia patients may respond to this conventional treatment to correct haemoglobin status, it is never the ultimate cure for the condition.

The emergence of blood stem cell transplant is a major achievement in the field of thalassemia treatment and for many individuals affected with thalassemia, a blood stem cell or bone marrow transplant is the only chance to survive.

For a successful transplant, patients need blood stem cells from a healthy and HLA (Human Leukocyte Antigen) matched donor, where the probability of finding a genetically matched donor is 1 in 10,000 to 1 in 2 million.

DATRI Blood Stem Cell Donors Registry plays an important role in this context by identifying donors and connecting them to patients in need. Founded in the year 2009, as a not-for-profit organization, DATRI supports patients who are affected with severe blood disorders by helping them find a genetically matched blood stem cell donor. DATRI has been instrumental in providing hope to patients through the kind and generous act of its donors in the registry.

“We lost all hope as our child had to undergo regular blood transfusion until the age of five and half years. But DATRI saved her life by facilitating a blood stem cell donation”, says a grateful, Mr. Sheikh Abdul Rahman, father of a six-year-old blood stem cell transplant recipient.

As part of the World Thalassemia Day, DATRI is organizing various awareness and donor recruitment drives at numerous places across the country. Despite the growing awareness, there is still a huge demand-supply gap in India for donors and this seems to be depressingly increasing every year. In 2016 alone, DATRI received more than 346 blood stem cell transplant requests from thalassemia patients. Out of the total request, only 24 patients received their transplants through donors from the registry.

This year, i.e. 2017, DATRI has so far received about 98 requests from thalassemia patients. Out of this, only 2 have been able to find a match till date. In total, DATRI has received around 798 request from thalassemia patients from 2015 till March 2017 but, have been able to facilitate only for 37 patients. Since its inception, 48 thalassemia patients have received their transplant through DATRI. According to the registry, the success rate of transplants carried out for thalassemia patients is 76%.

The figures reflect the forbidding reality that, there is an urgent need to find as many potential donors as possible. Although DATRI continues to carry out many awareness campaigns and registration drives, a real change will happen only when more and more people come forward to register and donate when found to be a match.

Joining the registry is very simple. All one needs to do is, fill up a registration form, sign a consent form and give a cheek swab for HLA typing, which will be sent to the laboratory. Once completed, the details of the individual will be stored in the registry’s database and only when found to be a match, a donor will be called to donate. Anyone between the age of 18-50 years can register as a blood stem cell donor via www.datri.org/join.

“Our daughter was diagnosed with thalassemia when she was just 21/2 months old, and she needed regular blood transfusions. Finally, through DATRI we found a donor for her and she is now, completely cured of the condition. We feel, the donor is more than God for us”, says the mother of an 8-year-old recipient, Gauri Madaan from Ludhiana.

DATRI is India’s largest unrelated adult blood stem cell donors registry. Through awareness and registration drives across the country, DATRI today has, over 2,06,800 people registered as potential blood stem cell donors, has facilitated 247 blood stem cell donations including 26 donations for international patients. DATRI works with 15 collection centers and has serviced 46 Transplant Centers across the world.

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