Crossing the barriers

Crossing the barriers
When five-year-old Fateh Singh was diagnosed with thalassemia major, he required constant blood transfusion. When it was further diagnosed that his blood was not producing the necessary anti-bodies too, he could not accept blood transfusions anymore. The only way to save his life was by blood stem cell transplant. The entire family was shocked and were frantically looking for a suitable donor. Soon, they found a donor through DATRI Blood Stem Cell Donors Registry and the transplant was done. As a principle, DATRI does not reveal the identities of the patient and donor to each other until one year after the surgery.

This is just one of the many transplantations coordinated by  DATRI, founded in 2009, by Raghu Rajagopal along with Dr Nezih Cereb  and Dr Soo Young Yang. It was established with the objective of helping patients suffering from fatal blood disorders like Thalassemia Major and Leukemia find healthy genetically matched donors of stem cells. They have, so far, assisted nearly 267 such needy patients.  Out of these, five are bone marrow transplantations while the rest are PBSC (Peripheral Blood Stem Cell) donations. 

Eradicating misconceptions

“PBSC is a very simple procedure, where one need not be admitted to a hospital. In this procedure, one’s blood is drawn like in case of blood donation and stem cells are used from there. There is a lot of requirement for stem cells all over the world. In a few countries, stem cell registry is maintained on a large scale and there is a good level of awareness among the public. People donate stem cells as a matter of course. In India, there is a need to spread awareness. In this light, DATRI conducts many awareness camps and registers donors from around the country. Since the probability of getting a right match is more within one’s ethnicity, we have to register several donors from within our country. As of today, there are 1,200 donor requests pending with DATRI,” says Srinivas, an
active volunteer of DATRI, Karnataka.

So far, more than 2,25,000 donors have registered with DATRI in India. This is simply not enough for the demand of stem cells here, in view of the size of the population. There is only 25% chances of one finding a donor within the family, while there is a 1 in 10,000 to 1 in 2 million is the probability of finding an unrelated genetically matched blood stem cell donor. Everyday, approximately 40 people are diagnosed with fatal blood disorders in India and 10,000 babies are born with thalassemia major, every year.

There are many misconceptions and fears regarding stem cell donation. However, all these are cleared when one talks to the relentless volunteers like Mansoor Chetlu who help DATRI connect with people in need by running around on errands like taking the blood sample of probable donors to the hospitals for testing and preparing the donors mentally for a bone marrow transplant surgery.

The volunteers in Karnataka also help conduct awareness camps in various companies and colleges to motivate more people to register as donors. While all of this requires a lot of effort by the volunteers, the final goal and results give them the motivation and strength to continue. “It gives me so much of satisfaction when I finally come to know that we were able to save a life,” says Mansoor. The Karnataka team works under the guidance of Gayathri Shenoy and the office is situated in Bengaluru. 

Becoming a donor

DATRI, Karnataka conducts awareness programmes in many ways like street plays, marathons, cyclethons, lectures and interactive sessions with celebrity endorsements, banners and flyers. For instance, in a recent event in mall in Mangaluru, 1008 donors came together to register. Post this event, DATRI has received various requests to  organise awareness events in various parts of Dakshina Kannada.

Smaller awareness camps are regularly conducted in colleges, corporate companies, government offices, places of worship and social gatherings. Donor-recipient meets are also held publicly to create awareness and inspire people.

DATRI hopes to save many more lives by creating awareness and registering more donors. DATRI is registered with Bone Marrow Donors Worldwide and is a member of World Bone Marrow Donors’ Association (WMDA).

For more details, one can visit www.datriworld.org or call on +919108792147.

Liked the story?

  • 0

    Happy
  • 0

    Amused
  • 0

    Sad
  • 0

    Frustrated
  • 0

    Angry