How Young India is fuelling the future of stem cell therapy and signing up to save lives – YourStory
Posted: October 20, 2019 at 3:45 am
Eighteen-year-old Aisha Choudhary was just like any other adolescent eyes filled with dreams and a heart brimming with energy. The only difference was she was battling a rare genetic disease, Severe Combined Immune Deficiency (SCID). Diagnosed when she was six months old and undergoing medical treatment for years, she was iron-willed in playing the cards she was dealt.
Since one of the most effective cures for SCID is a stem cell transplant (grafting of the parent cells from which all blood cells develop), Aishas parents, Niren and Aditi, decided to opt for that treatment mode. But their cells were not a complete match with their daughters, and they had to look at external donors. However, due to a low number of voluntary, registered stem cell donors, Aisha could not get a compatible donor whose genetic markers were a close enough match to hers. With no other alternative treatment available, Aisha had a bone marrow transplant. But, it came with a side-effect that cost her life Pulmonary Fibrosis, a disease known to damage the lung tissues.
Aishas Choudhary's role has been played by Zaira Wasim in The Sky is Pink.
Aishas journey has been captured in The Sky is Pink, a recent Bollywood movie starring Priyanka Chopra, Farhan Akhtar, Zaira Wasim, and Rohit Saraf.
The 18-year-olds life story is mirrored in the experiences of many who await stem cell donation as treatment for blood-related illnesses likeleukemia, lymphoma, and sickle cell anemia every year. With very few individuals signing up as donors and the probability of finding a match being a dismal 0.0008 percent in India (against a lean 16 percent abroad), fatalities are mounting year on year.
However, in recent times, there has been one small break in the clouds a number of youngsters, non-governmental organisations, and medical professionals have come forward and are working to spread awareness about stem cell donation and motivate a larger number of people to register as donors.
The stem cells in a human body mainly comprise red blood cells, platelets, and white blood cells. These are found in the umbilical cord of newborns and in the peripheral or circulating blood and bone marrow.
A stem cell donation is as simple and painless as a blood donation.
Certain diseases like blood cancer and leukemia tend to destroy the bone marrow or affect its functioning.For these, treatments like chemotherapy and radiotherapy are tried initially. However, in some cases, they do not prove effective for a cure. The only recourse then is replacing the patients stem cells with those of a healthy person.
One of the main criteria for a successful transplant is a good match between the stem cells of the donor and those of the patient. Therefore, a donor registry will administer a cheek swab test (tissue samples extracted from the cheek) on all potential donors to match cell characteristics. This procedure of pairing generic markers is called Human Leukocyte Antigen (HLA) in medical terms.
A cheek swab test in progress.
Each potential donors tissue is entered in the registry and given an identification number after the test is done. If the registry finds a match at any point in time, the donor is contacted to initiate the transplant.
There are many organisations today that are leading the charge in saving the lives of people suffering from serious blood disorders like cancer, thalassemia, and anaemia.
For instance, Datri, an Ahmedabad-based NGO, is working to create a wide and diverse database of potential stem cell donors by organising donation drives. Founded in 2009 by two doctors and an engineer, the organisation focuses on conducting awareness campaigns and helping individuals sign up on its registry as a committed and voluntary benefactor.
The team of the NGO Datri.
The idea for Datri was initially born in the minds of doctors Nezih Cereb and Soo Young Yang, who run a laboratory, Histogenetics, for determining tissue matches between patients and donors. Since pairing tissue types is imperative for any stem cell transplant, and confronting a severe shortage of donors, the doctor duo would run from pillar to post to meet hospitals requirements. Working with a number of the hospitals in India, they realised just how acute the shortfall was in people willing to donate stem cells. They recognised the immediate need to create a donor registry here.
Soon after, Raghu Rajagopal, an engineer from BITS Pilani and Director of ready-to-eat venture Millets and More, connected with them and they decided to start Datri.
Today, the functioning of the registry, its maintenance, and even the substantial costs involved in conducting the HLA matching are taken care of by the lab. In the last 10 years, Datri has gotten over four lakh people to register as donors and has saved around 600 lives through successful transplantation.
Every day, about 40 people are diagnosed with blood disorders in India. Though these can be cured through a stem cell transplant from a genetically matched donor, there is only a 25 percent chance of finding a match from within the family. Others have no option but to rely on unrelated donors. But the chances of getting a match is anywhere between one in 10,000 and one in two million. There is an urgent need to rope in as many potential donors as possible, which is precisely what Datri is trying to do, Raghu explains.
Another organisation that is dedicated to fighting blood disorders with stem cell treatment is DKMS-BMST. It was formed through a joint venture between two renowned NGOs DKMS, which is one of the largest international blood stem cell donor centres globally, and the Bangalore Medical Services Trust (BMST).
The team of DKMS-BMST.
DKMS was founded in Germany in 1991 by businessman Dr Peter Harf, after he lost his wife to leukemia. BMST was born in 1984 from the vision of Dr Latha Jagannathan, a medical director and managing trustee. Since both organisations had a common goal to find a matching donor for every patient with a blood disorder, they decided to come together to achieve it.
A group of youngsters registering to be stem cell donors.
So far, more than 37,000 people in India have registered as potential donors after attending DKMS-BMSTs donor drives.
In highly populous countries like India, thousands of people are in need of stem cell transplants every year to survive. Though donating stem cells is a painless and non-invasive process, it remains a lesser-known medical concept in India, with only 3.6 lakh people willing to play a part in it. Besides, the chances of stem cells of people of the same ethnicity matching are higher than those of individuals from different ethnic backgrounds. But, it is due to sheer lack of awareness that India lags severely in stem cell donations, say experts.
Students taking a cheek swab test at one of the colleges in Bengaluru.
Dr Govind Eriat, a reputed hematologist and bone marrow transplant specialist, says,
With a major hurdle to stem cell donation in India proving to be the myths surrounding the subject, the youth are coming forward to deconstruct common misconceptions.
For instance, 21-year-old Tejaswini Patel, a student of Information Science at New Horizon College of Engineering, Bengaluru, has been busting the false ideas on stem cell donation, starting among her family and friends. She says,
She adds, with a notable sense of pride, In the last two years alone, around 400 students from my college have registered themselves as donors.
(Edited by Athirupa Geetha Manichandar)
See the article here:
How Young India is fuelling the future of stem cell therapy and signing up to save lives - YourStory
- Bone Marrow Stem Cells [Last Updated On: June 24th, 2011] [Originally Added On: June 24th, 2011]
- Stem cells in bone marrow are being used to treat EB [Last Updated On: June 24th, 2011] [Originally Added On: June 24th, 2011]
- Stem cells in bone marrow are being used to treat EB [Last Updated On: June 25th, 2011] [Originally Added On: June 25th, 2011]
- Peripheral Artery Disease: Can Progenitor Cells Help? [Last Updated On: June 25th, 2011] [Originally Added On: June 25th, 2011]
- Bone Marrow Producing Insulin [Last Updated On: June 25th, 2011] [Originally Added On: June 25th, 2011]
- Stem Cells Reversing Endothelial Senescence [Last Updated On: June 25th, 2011] [Originally Added On: June 25th, 2011]
- Peripheral Artery Disease: Can Progenitor Cells Help? [Last Updated On: June 26th, 2011] [Originally Added On: June 26th, 2011]
- Science behind Enhancing Adult Stem Cells for wellbeing [Last Updated On: June 26th, 2011] [Originally Added On: June 26th, 2011]
- Bone Marrow Stem Cell Applications [Last Updated On: June 26th, 2011] [Originally Added On: June 26th, 2011]
- Immune Modulation by Bone Marrow Mesenchymal Stem Cells [Last Updated On: June 26th, 2011] [Originally Added On: June 26th, 2011]
- Expansion of Stem Cells by Valproic Acid [Last Updated On: June 27th, 2011] [Originally Added On: June 27th, 2011]
- STEM CELLS FOR MACULAR DEGENERATION Sam Smith's story.wmv [Last Updated On: June 27th, 2011] [Originally Added On: June 27th, 2011]
- StemLife's First Cord Blood Stem Cell Transplant Recipient [Last Updated On: June 28th, 2011] [Originally Added On: June 28th, 2011]
- Bone Marrow Differentiation to Heart? YES [Last Updated On: June 28th, 2011] [Originally Added On: June 28th, 2011]
- STEM CELLS FOR OTHER USES Interview with Sam Smith.wmv [Last Updated On: June 29th, 2011] [Originally Added On: June 29th, 2011]
- StemLife's First Cord Blood Stem Cell Transplant Recipient [Last Updated On: June 30th, 2011] [Originally Added On: June 30th, 2011]
- Bone marrow transplantation HD, ENG subtitles [Last Updated On: July 3rd, 2011] [Originally Added On: July 3rd, 2011]
- Cord Blood and Bone Marrow Stem Cells for Liver Failure [Last Updated On: July 4th, 2011] [Originally Added On: July 4th, 2011]
- Bone Marrow Stem Cell Applications [Last Updated On: July 4th, 2011] [Originally Added On: July 4th, 2011]
- Bone Marrow Producing Insulin [Last Updated On: July 5th, 2011] [Originally Added On: July 5th, 2011]
- Bone Marrow Stem Cell Donation [Last Updated On: July 6th, 2011] [Originally Added On: July 6th, 2011]
- Adult Stem Cells May Target and Repair Heart Attack Damage [Last Updated On: July 6th, 2011] [Originally Added On: July 6th, 2011]
- Stem cells used for medical treatment [Last Updated On: July 7th, 2011] [Originally Added On: July 7th, 2011]
- Bone marrow transplantation HD, ENG subtitles [Last Updated On: July 8th, 2011] [Originally Added On: July 8th, 2011]
- Adult Stem Cells May Target and Repair Heart Attack Damage [Last Updated On: July 8th, 2011] [Originally Added On: July 8th, 2011]
- From Surgical Repair to Stem Cell Repair: A Surgeon's Journey by Leonard Smith MD, FACS [Last Updated On: July 13th, 2011] [Originally Added On: July 13th, 2011]
- STEM CELLS - Bone Marrow Stem Cells (Balzitt).flv [Last Updated On: July 14th, 2011] [Originally Added On: July 14th, 2011]
- Spirulina DLA Naturals [Last Updated On: July 15th, 2011] [Originally Added On: July 15th, 2011]
- Spirulina DLA Naturals [Last Updated On: July 16th, 2011] [Originally Added On: July 16th, 2011]
- Insidermedicine In 60 - January 6, 2011 [Last Updated On: July 16th, 2011] [Originally Added On: July 16th, 2011]
- Christian Drapeau Talk About - Adult Stem Cells and StemEnhance./StemTech [Last Updated On: July 18th, 2011] [Originally Added On: July 18th, 2011]
- The potential of stem cells [Last Updated On: July 18th, 2011] [Originally Added On: July 18th, 2011]
- Insidermedicine In 60 - March 11, 2011 [Last Updated On: July 20th, 2011] [Originally Added On: July 20th, 2011]
- Blind Girl get's cure you need to see to believe" [Last Updated On: July 23rd, 2011] [Originally Added On: July 23rd, 2011]
- STEM CELLS - Bone Marrow Stem Cells (Balzitt).flv [Last Updated On: July 23rd, 2011] [Originally Added On: July 23rd, 2011]
- Expansion of Stem Cells by Valproic Acid [Last Updated On: July 23rd, 2011] [Originally Added On: July 23rd, 2011]
- Blind Girl get's cure you need to see to believe" [Last Updated On: July 24th, 2011] [Originally Added On: July 24th, 2011]
- LifeCell in Kalaignar Seithigal,Sun News [Last Updated On: July 26th, 2011] [Originally Added On: July 26th, 2011]
- Science behind Enhancing Adult Stem Cells for wellbeing [Last Updated On: July 27th, 2011] [Originally Added On: July 27th, 2011]
- Why treatment results vary after stem cell treatment [Last Updated On: July 27th, 2011] [Originally Added On: July 27th, 2011]
- From Surgical Repair to Stem Cell Repair: A Surgeon's Journey by Leonard Smith MD, FACS [Last Updated On: August 3rd, 2011] [Originally Added On: August 3rd, 2011]
- Insidermedicine In 60 - March 11, 2011 [Last Updated On: August 4th, 2011] [Originally Added On: August 4th, 2011]
- Why STEM-Enhance? [Last Updated On: August 10th, 2011] [Originally Added On: August 10th, 2011]
- Stem cells Transplatation in Completed Paralyze Dog. [Last Updated On: August 12th, 2011] [Originally Added On: August 12th, 2011]
- Stem cells Transplatation in Completed Paralyze Dog. [Last Updated On: August 15th, 2011] [Originally Added On: August 15th, 2011]
- Best natural skin care serum using stem cell technology [Last Updated On: August 19th, 2011] [Originally Added On: August 19th, 2011]
- "Bone Marrow Stem Cells" Donald Kohn [Last Updated On: August 29th, 2011] [Originally Added On: August 29th, 2011]
- The potential of stem cells [Last Updated On: August 31st, 2011] [Originally Added On: August 31st, 2011]
- Manatee man is paralyzed, but still plenty hopeful [Last Updated On: September 4th, 2011] [Originally Added On: September 4th, 2011]
- Stem Cells and Bone Marrow Transplants by Dipnarine Maharaj MD PhD [Last Updated On: September 5th, 2011] [Originally Added On: September 5th, 2011]
- MS Cure - Introduction to stem cell bone marrow transplant in Australia [Last Updated On: September 5th, 2011] [Originally Added On: September 5th, 2011]
- Bone Marrow/Stem Cell Transplantation: An Introduction, With Sonali Smith, MD [Last Updated On: September 5th, 2011] [Originally Added On: September 5th, 2011]
- Cancer Update: Autologus Stem Cell (Bone Marrow) Transplant [Last Updated On: September 5th, 2011] [Originally Added On: September 5th, 2011]
- Bone Marrow Stem Cell Transplant Live from Top US Hospital [Last Updated On: September 5th, 2011] [Originally Added On: September 5th, 2011]
- Adult Stem Cell Mobilization from Bone Marrow (Animation) [Last Updated On: September 6th, 2011] [Originally Added On: September 6th, 2011]
- Bone Marrow / Stem Cell Transplant Recovery Fund [Last Updated On: September 7th, 2011] [Originally Added On: September 7th, 2011]
- Bone Marrow Stem Cell Expansion by HOXB4 and p21 Knock Out [Last Updated On: September 10th, 2011] [Originally Added On: September 10th, 2011]
- Adult Stem Cell Mobilization from Bone Marrow (Animation) [Last Updated On: September 10th, 2011] [Originally Added On: September 10th, 2011]
- Bone Marrow/Stem Cell Transplant [Last Updated On: September 10th, 2011] [Originally Added On: September 10th, 2011]
- Bone Marrow/Stem Cell Transplant [Last Updated On: September 11th, 2011] [Originally Added On: September 11th, 2011]
- Macular Degeneration Improved With Stem Cells [Last Updated On: September 12th, 2011] [Originally Added On: September 12th, 2011]
- Stem Cell Transplant India,Bone Marrow Transplant India,Sickle Cell Anemia Treatment India [Last Updated On: September 20th, 2011] [Originally Added On: September 20th, 2011]
- Nurses Discuss Special Bonds With Bone Marrow and Stem Cell Transplant Patients [Last Updated On: September 20th, 2011] [Originally Added On: September 20th, 2011]
- Becoming a Blood Stem Cell Donor [Last Updated On: September 20th, 2011] [Originally Added On: September 20th, 2011]
- Bone Marrow and Stem Cell Transplant Patients Share Their Stories [Last Updated On: September 20th, 2011] [Originally Added On: September 20th, 2011]
- LittleBigPlanet 2 - (WIP) Stem Cell Sackboy Bone Marrow Bugaloo [Last Updated On: September 20th, 2011] [Originally Added On: September 20th, 2011]
- LittleBigPlanet 2 - Stem Cell Sackboy Quarter 4 Update (Bone Marrow Bugaloo) [Last Updated On: September 22nd, 2011] [Originally Added On: September 22nd, 2011]
- Bone Marrow Transplant Program Continues to Grow, Make a Difference [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- Can Stem Cell Prolotherapy or Bone Marrow Prolotherapy help articular cartilage defects? [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- Multiple Sclerosis, Stem Cells, and Hope, Part 2 [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- Bone Marrow Transplant Program Continues to Grow, Make a Difference [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- How to be an Anthony Nolan blood stem cell donor [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- Stem Cells extracted from bone marrow [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- Calum's stem cell donation for Anthony Nolan [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- Cancer Update: Autologus Stem Cell (Bone Marrow) Transplant [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- Bone Marrow - Stem Cell Prolotherapy [Last Updated On: September 24th, 2011] [Originally Added On: September 24th, 2011]
- Bone Marrow Stem Cell Aspiration and Re-Injection with PRP for Osteoarthritis by Dr Adelson [Last Updated On: September 24th, 2011] [Originally Added On: September 24th, 2011]
- Mesenchymal stem cells and marrow stromal cells---2nd--- [Last Updated On: September 25th, 2011] [Originally Added On: September 25th, 2011]
- Stem Cell Injections - Bone Marrow Prolotherapy - treatment for arthritis [Last Updated On: September 25th, 2011] [Originally Added On: September 25th, 2011]
- Chat w/ Dr. Maharaj, founder of S. FL. Bone Marrow/Stem Cell Transplant Institute [Last Updated On: September 25th, 2011] [Originally Added On: September 25th, 2011]