This text is in partnership with DKMS BMST Basis India
“Being a stem cell donor has given me a way of nice pleasure. It’s a profound reminder of the facility of compassion and the interconnectedness of lives,” says Mandeep Mann, a blood stem cell donor.
Mandeep Singh, a farmer from Punjab was recognized with Persistent Myeloid Leukaemia (a sort of blood most cancers) in 2009. He struggled with common hospital visits, medicines, chemotherapy and blood transfusions for over 13 years. When the remedy didn’t yield the specified outcomes, medical doctors informed Mandeep that he would wish a stem cell transplant.
Since there was no matching donor in his household, the 36-year-old had an excruciating three-year wait earlier than an unrelated matching donor was recognized and he underwent the stem cell transplant in January 2020.
In a coincidence, the ‘one in one million’ donor not solely shared the identical genetic make-up but in addition the identical identify — Mandeep! A 40-year-old techie from Bengaluru, he knew what his namesake was going by way of, as his spouse is a most cancers affected person. He realised the significance of donating stem cells, which he did by way of the DKMS BMST Basis India.
The non-profit organisation is devoted to the struggle in opposition to blood most cancers and different blood problems, similar to thalassemia and aplastic anaemia. It helps blood most cancers and blood dysfunction sufferers nationwide by elevating consciousness about blood stem cell transplantation and registering potential blood stem cell donors.
When the 2 Mandeeps met, there wasn’t a dry eye within the room; gratitude was throughout. “This man gave me a brand new lease of life. I’m cured. No extra medicines,” mentioned Mandeep Singh.
DKMS BMST Basis India has helped tons of of individuals, like Mandeep, who had been ready for an identical stem cell donor to get a brand new lease on life.
Why India wants extra stem cell donors
The worldwide registry DKMS was based by Peter Harf after he struggled to discover a matching donor for his spouse, Mechtild Harf, who was battling leukaemia. She was informed that the one treatment was a bone marrow transplant. Unable to search out matching donors within the household, Peter Harf based DKMS together with his spouse’s transplant doctor Dr Gerhard Ehninger in 1991. On the time, there have been solely 3,000 registered stem cell donors in Germany. Regardless of registering 65,000 extra donors within the first yr, Mechtild couldn’t get an identical donor and handed away.
Conserving his promise to his spouse, Peter devoted his life to registering donors internationally, to make sure that no affected person died as a result of unavailability of an identical donor. As we speak, DKMS has offered over 1,20,000 blood most cancers sufferers a second probability at life.
Persevering with Peter’s mission, DKMS-BMST — a three way partnership between DKMS and BMST (Bangalore Medical Companies Belief) was began to assist Indians discover potential donors in India.
The Globocan 2022 report from the International Most cancers Observatory discovered that greater than 1,15,000 new circumstances of blood most cancers had been recognized in 2022 in India. In the identical yr, greater than 77,000 Indians died due to blood most cancers.
Blood stem cell donation serves as an important lifeline for sufferers battling blood cancers and different blood problems, similar to sickle cell illness, aplastic anaemia, and thalassemia. These situations impair the physique’s skill to generate wholesome blood cells, resulting in extreme well being issues. A stem cell transplant affords an answer by changing the diseased bone marrow with wholesome stem cells, permitting the physique to renew regular blood cell manufacturing and considerably enhancing the affected person’s probabilities of restoration.
There are millions of sufferers who want a blood stem cell transplant to get a second probability at life. Nevertheless, India faces a big scarcity of obtainable stem cell donors for stem cell transplants. This underscores the necessity for extra stem cell donors as a easy act of donation can save a life.
Patrick Paul, chief govt officer, DKMS BMST Basis India, says that they got here to India to assist the sufferers right here. “It’s troublesome to search out matching donors for Indians from overseas. We wanted donors with Indian genetic traits, which is why we started our operation within the nation. We’ve registered 1.5 lakh donors within the nation to date. We’d like not less than 10 to twenty lakh to assist the sufferers within the nation at present,” he says.
He explains that their mission is to present as many sufferers (with blood most cancers and blood problems) as doable a second probability at life. India has a really low variety of registered donors in comparison with the huge inhabitants. “There are over 1.3 billion folks in India, however solely round 0.09 p.c are registered as potential stem cell donors,” he provides.
Apart from elevating consciousness about blood most cancers and serving to sufferers by registering donors DKMS-BMST helps underprivileged sufferers entry stem cell transplant.
For the reason that prices of such transplantations are very prohibitive, the muse additionally gives monetary help to sufferers who can’t afford the remedy.
It additionally runs a programme for thalassemia sufferers — an inherited blood dysfunction the place the physique doesn’t produce sufficient haemoglobin. Yearly, greater than 10,000 new circumstances of thalassemia are recognized. “Thalassemia sufferers need to undergo blood transfusions their total life. This may be averted with a stem cell transplant. The perfect outcomes are observed when that is accomplished between the ages of zero to seven,” provides Paul.
Step one to match donors and sufferers for stem cell transplants is HLA typing. The inspiration does this without spending a dime for thalassemia sufferers and their households in India. Paul says that they’ve accomplished HLA typing for 10,000 thalassemia sufferers in India to date.
They’re working with many transplant centres throughout the nation which have entry to their donor database registry, together with donors from the WMDA (World Marrow Donor Affiliation). “If a transplant centre has a affected person and is aware of their HLA profile, they will search for potential matches on our database. They’ll seek for donors worldwide. We hope for our donor pool to extend to assist extra sufferers in want,” he provides.
Tips on how to change into a donor?
The principle problem, and the muse’s major focus, is rising donor registrations. Solely 25 to 30 p.c of sufferers discover matching donors inside their household, leaving 70 p.c reliant on unrelated donors accessible by way of stem cell registries. Ethnic matching considerably boosts Indian sufferers’ possibilities.
“Having a big donor registry comprising folks of Indian origin will be certain that extra folks with blood most cancers and blood problems, similar to thalassemia and aplastic anaemia, can profit from this remedy modality. If a well-matched wholesome donor is accessible to the affected person, the transplant consequence could be very encouraging. The success charges can differ from case to case as a result of affected person and illness traits variations, but when accomplished on the proper time, 60 to 70 p.c of sufferers may be fully cured. In actual fact, a yr after transplant, many sufferers can lead close to regular lives,” shares Dr Sunil Bhat, director and medical lead, paediatric haematology, oncology, and blood and marrow transplantation, Narayana Well being Community Hospitals.
Any wholesome Indian grownup between 18 and 55 can register as a possible stem cell donor. All you’ll want to do is go to the web site and click on on register. You’ll fill in your fundamental particulars and share your tackle, by way of which you’ll obtain a swab equipment at residence. “Swab your cheek and return the equipment following the directions on the envelope. The swabs will then be analysed in our lab to find out your HLA (tissue) traits — that is how we match donors and sufferers,” states the web site.
Nevertheless, that is solely step one. Donors should be dedicated, emphasises Paul. If you’re matched with a affected person and also you get a request to donate, it’s necessary for the donors to donate and assist, he provides. “A lot of the registered donors internationally are Caucasians, who usually don’t match Indian genes. There are a whole lot of leukaemia sufferers in India who battle to search out donors with an Indian ethnicity,” says Paul.
As DKMS works in direction of registering extra donors, you can be one too. Register right here.
Edited by Pranita Bhat
