Johannesburg - Over the last three decades, the South African Bone Marrow Registry (SABMR) travelled almost six times to the moon and back to collect blood stem cells from all four corners of the globe for patients in need of transplants.
This year, in the lead up to World Marrow Donor Day on September 17, the SABMR is launching a campaign to reach 100 000 blood stem cell donor registrations.
The awareness campaign, which will see a star named after a lucky donor once the target is reached, aims to bolster donor numbers to increase the probability of a patient in need finding a match for transplant. Deputy SABMR director Jane Ward said they considered each of their almost 80 000 existing donors as stars.
“Much like stars that are born in the same cluster share similar chemical signatures which help scientists track the stars they are related to, so our donor searches help us to find genetic twins among humans that share matching DNA, no matter where in the world they are. And just like a star falls to grant someone’s wish, people, whether it’s family, friends or strangers, make sacrifices to make that wish come true. We are asking people to be a star in someone’s night sky by signing up to become a blood stem cell donor,” she said.
To date, the SABMR has saved the lives of more than 600 patients. However, only 25% of these donors are locals. Ward says when no local matches are found, they have to look abroad, which takes time and can become costly.
“Our patients don’t have the luxury of time. They suffer from life-threatening illnesses such as leukaemia, lymphoma, aplastic anaemia and immune deficiency disorders that can claim their lives within the space of a few weeks or months. Less than half of blood stem cell transplants in the country are from donors in South Africa. The majority are from Germany and America. If we had a larger local donor pool, patients could be helped sooner, thereby increasing their chances of survival.”
Ward said there were currently 78 000 registered donors and there was a 1 in 100 000 chance of finding a match. The odds are even greater for patients of colour ‒ 1 in 400 000.
“Our biggest challenge is also to have the registry as racially diverse as possible, especially given South Africa’s population demographic. A patient has the best chance of finding a match in their ethnic grouping. At present the ethnicity split is as follows: Asian/Indian- 9.9%, Black-10%, Coloured- 7.8%, White- 67%, Other/Unknown- 5.2%,” she said.
Every year, at least 200 patients are referred to the SABMR in the hopes of finding a matching donor.
Mfundo Ngwenya, 30, from Durban said he signed up in 2012 at a mall registration drive and was thrilled to find out he was a match for a patient.
“I grew up in a household where we were taught to look out for each other and help where it was needed. It was a natural decision for me to sign up as a registered bone marrow stem cell donor as I was already an organ donor. This is not the norm in our culture as usually you have to consult your elders and stem cell donation is not really something that people are aware of. I underwent several tests to ensure that I was medically healthy to do so, but it is nothing compared to the suffering of those in need. I don’t know who the patient is, I am just grateful that I was able to give them a second chance at life.”
International skateboard sensation Jean-marc Johannes, 31, said for him becoming a member of the SAMBR was very personal.
“This cause is close to my heart and home, as I’ve dealt with the challenges of having asthma since childhood. My grandmother, who had supported my skateboarding since the beginning, died of cancer. She was my beacon of motivation to all and always told me that I could accomplish anything in life, and I believed her. I’d hope that through my efforts I am able to create awareness in our country to realise the dreams of others that deserve a second chance at life.”
Ward added that each donor added to the registry increased the probability of a patient finding a match.
“In an ideal world, there should be a local donor waiting and ready to go when a patient needs a transplant, as is the case in many other countries. In SA, only 1% of the population are registered stem cell donors, compared to 13% in Cyprus, 12% in Israel and 9% in Germany,” she said.
Ward concluded that the goal of SABMR was to make the world shine a bit brighter for those afflicted with blood disorders.
“We are intimately connected with the universe – even our bodies are said to have been made of many of the same elements that stars are made of – which is why we thought it apt to name a star after a donor once we hit the 100 000 mark. The figure is significant as it symbolises the odds of finding a match. Currently, the chances of finding a tissue match are around 1 in 100 000,” she concluded.
To boost donor numbers this month, the SABMR will be hosting various events across the country. These include, physical donor drives, fun runs, celebrity-judged bake-offs and more. For more info on these events and how you can get involved, visit the https://sabmr.co.za/world-marrow-donor-day-wmdd/ or follow them on @sabonemreg.
If you are between the ages of 16 and 45 and want to become a donor, contact the SABMR at 021 447 8638 or email: [email protected]. Financial donations can also be made via www.sabmr.co.za/donate.