Tag: stem cell donation

Stem Cell Donor Drop-off Is Costing South Africa

By Palesa Mokomele, Head of Community Engagement and Communication at DKMS Africa.

For many blood cancer patients, finding a matching stem cell donor for a transplant is often the biggest hurdle. Yet one of the greatest risks can emerge after a match is found, with some registered donors becoming unavailable when they are needed most, delaying treatment and adding emotional, medical and financial strain for patients and their families. Moreover, the consequences of donor attrition extend well beyond the patient’s household, creating wider costs for healthcare systems, workplaces and the economy.

The costs begin with a longer wait, which carries medical risk. A study of unrelated donor transplants found that a longer confirmatory typing process, the stage at which a matched donor is contacted and retested, affected survival independently of how closely donor and patient were matched. The same research recorded two-year survival of 59% among patients with fully matched donors against 38% among those with a mismatched donor. When the best match drops out, doctors may have to proceed with a less closely matched donor or keep waiting, and neither option is one a family would choose.

The emotional toll tends to be heaviest before the transplant itself. A prospective study following transplant patients found that anxiety was most often elevated in the period before transplant, affecting 29% of patients, a higher rate than in a matched sample of the general population. The people caring for them carry a heavy share as well. Nearly 47% of caregivers reported clinically significant anxiety in the lead-up to transplant, and their distress was linked to poorer physical health and weaker coping.

What families describe to me most often is the uncertainty. Knowing a possible donor exists, but not yet whether that person will go ahead, leaves them unable to plan work, school or care arrangements around a date nobody can give them. Every donor who drops out at that stage stretches the period further, and that strain can feed back into outcomes. In a nationwide study of allogeneic transplant patients, those who had depression before transplant had lower overall survival afterwards than those who did not.

The question of income comes up early too. Between 20% and 50% of blood cancer patients report financial strain from their illness, including lost earnings and diminished savings to cover treatment and travel. A delayed transplant can leave a patient too ill to work for months, with no salary coming in, and the household often loses a second income as well when a parent or partner steps back from work to be at the hospital. That second loss is easy to overlook. Among parents of children newly diagnosed with high-risk Hodgkin lymphoma, researchers measured an average drop of about 9% in how much they could get done while at work, before accounting for any days they took off.

Those losses do not stay inside the household. Lost wages mean less income tax paid, and less money spent in the local economy, and when a patient does not survive, their contribution ends for good. An international study of productivity lost to premature cancer deaths across five major emerging economies found that South Africa had the highest cost per death of the group, at about US$101,000 (roughly R1.7 million). Getting patients to transplant sooner is one of the more practical ways to reduce that loss, and keeping matched donors in the search is a large part of how that happens.

The registry absorbs a cost of its own. Registering a single donor costs about R800. This is money contributed by the people and organisations who support our work because they want patients to have a chance. When a matched donor drops out, the resources invested in registering and maintaining that donor do not translate into a potential transplant opportunity for a patient.

The encouraging part is that attrition can be reduced. In research drawn from 91,479 donor requests at a German registry, donors who took part in initiatives asking them to provide an extra sample or flag periods when they would be unavailable were more than 10 percentage points more likely to be available when a patient needed them. Staying in contact with donors between registration and a match makes a measurable difference to whether they can help when the time comes.

That means treating registration as the start of a relationship that has to be maintained. For donors, it means keeping records up to date and regularly informed. If they have moved, changed numbers or stopped using an email address, they can update details online in just a few minutes. If their health or circumstances have changed in a way that affects whether they could donate, it is vital that they tell the search teams so that this can be planned around it before a patient is desperately waiting.

With more than 200,000 donors on the registry, the transplant team can only work with those who are able and willing to go ahead when they get the call, and every donor who keeps organisations informed brings those two figures closer together.

Sunflower Month’s Hope that Lasts: The Baby who Inspired a Donor

Photo by William Fortunato on Pexels

A chance encounter in a hospital waiting area led to a remarkable full-circle moment when a South African stem cell donor unknowingly saved the life of the very child who inspired her to join the registry.

In October 2022, Petro was walking into a hospital in Centurion for a routine check-up when she stopped to speak to a grandmother sitting near the entrance with a baby on her lap. The little girl, just a few months old, was receiving treatment for leukaemia. Petro went in for her appointment, went home, and could not stop thinking about her.

“That was quite a powerful meeting, realising that this was a really sick baby, and that her life depended on having a life-saving stem cell transplant,” she recalls. Within days, she had ordered a swab kit and joined the South African stem cell registry.

The little girl was Lydia.

Her family had first noticed something was wrong after noticing a yellow cast on her skin in a photograph taken with her older brother, something that nobody had registered in the day-to-day. At four months old, Lydia was diagnosed with Infant Acute Lymphoblastic Leukaemia and admitted to hospital the same day. Long blocks of chemotherapy followed, along with recurring infections her weakened immune system could no longer fight, and a week in intensive care with pneumonia.

“When Lydia was diagnosed, our whole world changed,” her mother, Estelle, remembers.

Her medical team had been clear from the start that a stem cell transplant offered the best chance of survival. Towards the end of 2022, the family received the news they had been hoping for: a donor match had been identified. Shortly before the scheduled transplant, the planned donation was unable to proceed.

“This broke my heart,” Estelle shares. “It felt like we were back at the beginning again, and that was painful.”

The search resumed with no guarantee it would end differently. Only 30% of patients needing a transplant find a compatible donor within their own family. For Lydia, that meant her chances depended on an unrelated donor somewhere in the world whose tissue type matched hers.

When the call came, Petro was nearing 50 and half expected to be told she no longer qualified. “I was actually quite happy and honoured, because I knew this is it,” she explains. “I knew there was a patient on the other side who really needed this as a life-saving measure.”

She describes the donation process as straightforward. “It was nothing more than a blood donation times two, basically. It’s a few hours out of your day.” 

Lydia was admitted for her transplant in February and spent nearly seven weeks in isolation with her mother. Gradually, signs of recovery emerged. She began eating again. She started to put on weight.

Months later, once the confidentiality period had lapsed, Petro joined a WhatsApp call with Lydia’s family. She began telling them why she had registered: the hospital in Centurion, the baby, and the grandmother at the entrance. As she spoke, she noticed the family starting to smile. The grandmother was on the call too.

“Lydia’s mother told me that they were that patient, they were that family,” she says. “I was absolutely flabbergasted. What are the odds of that happening?”

Her own family took it just as hard. “My mother cries every time we talk about Lydia,” Petro adds. “She remembers seeing her at the hospital when she was so tiny.”

Lydia is now four years old. She has caught up on developmental milestones she had missed and has not been readmitted since the transplant. “She will always have a special place in my heart,” Petro says. “She’s got her whole life in front of her.”

The cost behind every match 

None of it happens without a swab kit, and a swab kit is not free. Signing up costs the person registering nothing, but every entry carries a cost, most of it in the laboratory tissue typing that turns two cheek swabs into a searchable set of markers. This year, Sunflower Month is being marked under the theme Hope That Lasts, with every financial contribution helping to fund another registration through the laboratory and onto the registry, where a searching medical team can find it.

Held each September, the initiative dates back to 1999 and the founding of The Sunflower Fund, after two young South Africans, Darren Serebro and Chris Corlett, were diagnosed with leukaemia. Corlett painted a picture during treatment and called it Sunflowers of Hope. Following their passing, a vision to grow the registry so patients would have a better chance of finding a match. More than two decades later, Lydia became one of those patients, diagnosed with the same illness.

South Africans between the ages of 17 and 55 who are in good health can register as stem cell donors at no cost.

Petro has one message for anyone weighing it up. “Take that responsibility seriously and really commit. You can mean the difference between life and death for a patient.”

Palesa Mokomele, Head of Community Engagement and Communications at DKMS Africa, says the gap between a willing volunteer and a usable match is a financial one. “Every contribution puts another swab through the laboratory and another name on the registry. If you are eligible, order a kit. If you are not, fund one. And say something about it to the people you know, because Petro only registered because a stranger at a hospital told her what was happening. This year’s theme is a reminder that something you do today can make a difference years from now, perhaps for someone you have never even met.”

The Stem Cell Registry Has 200 000 Donors. Black South African Patients Need One Million.

Photo by Elizeu Dias on Unsplash

By Palesa Mokomele, Head of Community Engagement and Communication at DKMS Africa

For years, Black South African patients with blood cancer or blood disorders searching for a stem cell donor were told the odds were not in their favour. Their ancestry, the thinking went, carried too much genetic diversity for a donor search to reliably succeed. New research published in Blood Global Hematology says otherwise. The genetics, it turns out, are not the problem. What stands between many Black patients and a lifesaving transplant is the registry, and who is on it.

A study of nearly 57 000 South Africans mapped the HLA profiles of all four of the country’s population groups to calculate each community’s real odds of finding a match. HLA markers are what doctors use to determine whether a donor’s stem cells are compatible with a patient’s. In a same-community registry of a million donors, a Black South African patient’s probability of finding a full match is 80%. For a White patient, the figure is 81%.

The Registry Gap

The registry does not reflect the country it serves, and that gap is costing lives. South Africa is approximately 81% Black African and 7% White. In the study cohort, Black South Africans made up roughly 37% of donors and White South Africans 45%. Donor drives went where they were easiest to run, and the communities hardest to reach were left out.

The findings revealed large areas of the country where Black African donor representation is almost absent. Entire provinces contribute too few donors for researchers to meaningfully analyse matching patterns. Of the fifteen subpopulations large enough to analyse by language and province, seven were White communities.

The two least genetically diverse groups in the study were Afrikaans-speaking White people in Mpumalanga and isiXhosa-speaking Black Africans in the Western Cape. Because people in these communities are more genetically similar to one another, each new donor has a better chance of matching someone who needs them.

The registry is at least heading in the right direction. Fifty-six percent of new registrations come from people of colour. But it holds just 200 000 donors across all population groups, and the destination is a registry of a million Black African donors alone.

The Human Cost

Consider what that means for a patient like Sbahle, a six-year-old girl diagnosed with aplastic anaemia before she could pronounce the word. She has spent four years, most of her life, waiting for a donor. She is stable, back at school, and still without a match. Not long ago, a family in her position would have been told the odds were against them, and there was little to be done. We know better now.

For a patient still waiting, the donor who could save them may already be out there, alive, healthy, and simply not on the registry.

Not Everyone’s Odds Are the Same

The progress is not uniform. Coloured and Indian/Asian South Africans face a harder search: their greater genetic diversity means common profiles cover far less of the group, around 21% for Coloured patients, and full matches are rarer.

The outlook is not bleak. In a registry of 100 000 donors from their own group, a Coloured patient has roughly a 51% chance of a nine-out-of-ten match and 92% of an eight-out-of-ten. Advances in transplant medicine are also shifting what a near-match means in practice. Recent research has shown that post-transplantation cyclophosphamide, a drug used to prevent graft-versus-host disease, significantly reduces the impact of donor mismatches, to the point where a single mismatch may be clinically negligible. For Coloured and Indian/Asian patients who cannot find a full match, that development changes the calculation considerably.

From Research to Reality

This research also points to where investment should go. The biggest gains will not come from a new algorithm or a better search tool. They will come from signing up donors in the communities the registry has missed. That is slow, expensive, deeply unfashionable work, and it is the thing that actually gets a patient to a transplant.

Recruitment has to reach into Limpopo, KwaZulu-Natal, the Eastern Cape, the Northern Cape and the rural areas with no donor base at all, and it has to be permanent, not a run of once-off drives.

Science has now answered one of the biggest questions in stem cell transplantation: Black South Africans are not inherently harder to match. The challenge is building a registry that reflects the country itself. Every new donor brings that goal, and patients like Sbahle, closer.

56% of New SA Stem Cell Donors Are Under 25 and Saving Lives

Photo by Elizeu Dias on Unsplash

More than half of all new stem cell donors registered in South Africa in 2025 were between the ages of 17 and 25. And, according to a growing body of medical research, they are also the most valuable donors on the planet.

Research analysing more than 10 000 stem cell transplants has found that for every ten-year increase in donor age, patient survival rates two years after transplant decline by approximately 6 to 7%. Donors aged 17 to 25 consistently provide patients with the best chance of survival. A separate long-term study found that transplants from younger donors successfully engrafted up to 30 000 stem cells that continued contributing to blood production for decades, compared to a tenfold decrease in transplants from older donors. It has also been confirmed that donor age has a greater influence on transplant success than previously assumed, with younger donors associated with improved overall survival and reduced relapse risk.

The evidence is bearing out in South Africa’s own numbers. DKMS Africa’s donor base has grown from 18 801 in 2021 to more than 173 000 by the end of 2025, a ninefold increase in four years. New sign-ups in 2025 alone reached more than 60 000, nearly double the 2023 figure. The 17 to 25 age group has led that charge, growing from 19% of new donors in 2021 to 56% in 2025. Forty percent of last year’s new donors were between 17 and 21.

Context matters: every hour, someone in South Africa is diagnosed with blood cancer. For many patients, a stem cell transplant from a matched, unrelated donor is the only viable path to survival. The match they need may already be on the registry. Or it may not exist yet.

“In South Africa, finding a compatible donor depends on human leukocyte antigen (HLA) characteristics that are inherited and vary significantly across ethnic groups. Patients have the highest probability of finding a match within a registry that reflects their own background. Currently, patients from black, coloured and Indian communities face considerably lower odds than those from communities better represented in local and international registries. A registry that grows without also diversifying fails the patients who need it most. That is why more young people of diverse backgrounds need to step forward and close this gap,” says Palesa Mokomele, Head of Community Engagement and Communications at DKMS Africa.

She adds, “This Youth Month, we need every young person who has not yet registered to know that their moment is now, and every adult who has not yet registered to ask themselves honestly: what is my excuse?”

The registration process takes minutes: a free swab kit arrives by post, is completed at home, and returned. No blood is drawn. No appointment is made. A registered donor is only contacted if they prove to be a genetic match for a patient in need, and even then, the decision to proceed remains entirely theirs. Registering is the first step. Following through, if called upon, is the one that saves a life.

To register, visit www.dkms-africa.org.

One Mother Beat Blood Cancer Against the Odds. Thousands of Others Are Still Searching for Their Chance.

As a professional photographer and mother of two young children, Claire had always been busy, but the long hours and constant fatigue felt like an occupational hazard. She never imagined that exhaustion could signal something far more serious than a demanding schedule.

Then, in January 2024, it happened: Claire blacked out at her desk while editing videos. It was her body’s final, unmistakable warning. What followed was a hospital stay, a bone marrow biopsy, and a diagnosis that would change her life forever. Claire had been diagnosed with blood cancer, specifically Myelodysplastic Syndrome (MDS), a serious bone marrow condition that, without treatment, can be fatal.

She was just 30 years old. And she was far from alone. Blood cancer remains one of the top five causes of cancer death in South Africa. Despite being potentially curable, countless patients never find their matching donor in time. Claire was determined not to become another statistic.

A Road Full of Obstacles

Claire’s path to diagnosis was not straightforward. Doctors initially attributed her worsening symptoms to iron deficiency, leaving her untreated as her condition quietly progressed. By the time MDS was correctly identified, the only viable path forward was a stem cell transplant.

While awaiting a donor match, Claire endured bi-weekly injections to keep her body stable, a gruelling holding pattern as her family and medical team searched for hope. That hope came through DKMS Africa, which successfully identified a fully matched, unrelated donor for Claire.

The first transplant, using cells from that 100% unrelated matched donor, was performed with great hope. Unfortunately, it was not successful.

Claire’s medical team was not deterred. Turning to family, they proceeded with a haplo-identical transplant, a “half-match” procedure using stem cells donated by Claire’s brother. This second transplant was successful.

Why Every Match Still Matters

Claire’s outcome is cause for deep gratitude and genuine celebration. But her journey also carries an urgent message that must not be lost in the relief of her survival.

Haplo-identical transplants, where stem cells are donated by a family member who is only a partial genetic match rather than a full one, can offer a path forward when a fully matched donor cannot be found. However, this option is not available or ideal for everyone. Not all patients have a suitable family donor, and even when they do, the procedure carries greater medical complexity and risk than a fully matched stem cell transplant.

For most patients, a 100% match from an unrelated donor remains the gold standard: the safest and most effective option. Yet only around 30% of patients find a compatible donor within their own family, meaning the remaining 70% depend entirely on a stranger’s decision to join the registry. The more people who register as potential donors, the greater the chance that every patient in need will find their match.

The critical shortage of registered donors, particularly from diverse ethnic backgrounds, means that for many, the search ends without a match. Despite blood cancer being potentially curable, countless patients never find their matching donor in time.

Every name added to the registry is a potential lifeline for someone, somewhere, waiting for their match.

A Family Restored

Today, Claire is recovering. Her children have their mother. Her family, who stood beside her through diagnosis, uncertainty, and two transplants, now share in a renewed sense of hope and possibility.

Her story does not end with survival. It continues with a plea to every person who has considered registering as a stem cell donor and hasn’t yet done so. “Help save others like me. We need more people to register as potential stem cell donors. Your registration could mean the difference between life and death.”

Tough Enough to Save a Life? SA Athletes Challenge Men to Register as Stem Cell Donors

Jaco Pretorius was inspired by his best friend’s life being saved by a stem cell transplant.

With South African men having a 20-50% higher incidence rate of blood cancers than women, sports icons Jaco Pretorius, Seabelo Senatla, and Temba Bavuma are leveraging their platforms to challenge more men to join the stem cell registry and help rewrite the odds for patients in need.

The challenge confronts a widespread public disconnect from the issue. “Many people seem to be disinterested, until one of their own is diagnosed,” notes Senatla. “People tend to be nonchalant when things don’t pertain to them; they have this attitude of ‘not my problem’.”

Pretorius agrees that a lack of awareness is a major hurdle. “My experience is that people are not aware of the great need in our country and the simplicity of the process. But we’ve seen so many times how sport has the power to unite South Africa. When athletes from different backgrounds set an example, I believe people will follow, and together we can make a real difference.”

His advocacy is rooted in his own firsthand experience. Motivated to register after his best friend’s life was saved by a transplant, he was later called upon to donate. He hopes sharing his story will dismantle common fears. “The perception is that it is a painful procedure which carries personal risk. My experience was the complete opposite.”

A concern Bavuma often hears about is the time commitment, especially for those with demanding jobs or family responsibilities. “But if you do get the call to donate, those few days potentially add years, even decades, to someone else’s life. That’s a trade any of us should be willing to make.”

Tackling a common myth, Senatla says, “One of the biggest myths I’ve had to debunk is people having the notion that since stem cells are taken from them, they’ll be left with fewer stem cells. The body of a healthy person is constantly producing stem cells. You’re not in danger of having too little if you donate some to someone.”

For him, the motivation to act is deeply personal. “I grew up in an environment in which I was made to understand that your gifts are not only for you. Other people must benefit as well. That’s what’s in practice here.”

Addressing men who might be hesitant, Senatla points out that they aren’t losing anything by registering. “Rather, they’re affording someone who is ill a second chance at life.”

Bavuma challenges the passive mindset. “In cricket, you can’t field, thinking someone else will take the catch. The same goes for this. Too many people assume there are enough donors already, or that someone else will register.”

Pretorius adds, “I would encourage other people to immediately take action. The process is pain-free, professional, non-invasive, and there are no financial implications – only your time and commitment.”

The outcome of his simple act was profound. “I received communication from the stem cell recipient that the transplant was successful, and the person is healthy and well. That was one of the best feelings – to know that through such a simple action, someone else’s life was saved.”

Palesa Mokomele, Head of Community Engagement and Communications at DKMS Africa, highlights the impact of these role models. “While men currently make up the majority of registered donors in South Africa, the overall pool of donors is critically low compared to the national need. Having respected public figures like Jaco, Seabelo, and Temba lead this conversation is invaluable. When men see other men stepping up, it directly challenges hesitation, shifts perceptions, and ultimately helps save lives.”

Senatla offers a reminder of our shared humanity. “You’re never too important to help, and you should help because you can. Being in a position to help is an absolute privilege.”

“This isn’t a spectator sport; everyone who can help needs to get in the game,” concludes Bavuma.

South Africans aged 17 to 55 who are in good health can register as potential stem cell donors. The process is simple and starts with an online registration and a cheek swab.

Register today at https://www.dkms-africa.org/save-lives.

Right to Life Hangs in the Balance for Two SA Girls This World Children’s Day

SAG Leukaemia. Credit: Scientific Animations CC0

At four years old, a child’s world should be full of crayons, playgrounds, and fairy tales. For Dianty and Nqobimpi, it has become a world of chemotherapy, blood transfusions, and sterile hospital rooms. As the world observes World Children’s Day on 20 November and its theme of “My day, my rights,” their fight for the basic right to life casts a light on the most critical need of all: a second chance, which can only come from a matching stem cell donor.

A Donor for Dianty

Hailing from Randfontein, Dianty is a bright and joyful four-year-old whose smile can light up any room. Yet, behind her cheerful spirit lies a harrowing health battle. It began last year with inexplicable fevers and stomach pains, initially dismissed as a sinus issue and later as growing pains. When Dianty suddenly lost the ability to walk, her mother, Claudine, knew something was terribly wrong.

After she was admitted to the hospital, blood tests revealed the devastating truth: Dianty had leukaemia. Chemotherapy began immediately. “The ups and downs were relentless,” Claudine explains. Despite initial progress, Dianty relapsed just after her fourth birthday this year, forcing her family back to square one.

The search for a stem cell donor has been fraught with disappointment. With no suitable match found within her family, Dianty’s hope now rests on the public registry. “You never think it will happen to you until it does,” says Claudine. “I encourage every single person to go and do the cheek swab… You can save the life of a little child. You can give them a second chance.”

Nqobimpi Needs a Match

Nqobimpi from Pretoria is facing a similarly terrifying reality. Her journey began with persistent nosebleeds and terrifying episodes of vomiting blood, which left her weak and pale. Her mother rushed her to a clinic, which led to a referral and eventually a diagnosis of T-Cell Acute Lymphoblastic Lymphoma (T-Cell ALL).

Expressing the shock that rocked their family, her mother shares, “I wasn’t aware children could get cancer.” Nqobimpi was pulled out of crèche, and her life became a cycle of month-long hospital stays for treatment. The strain has rippled through their family, affecting her siblings’ ability to focus at school as they worry constantly about their baby sister. All Nqobimpi wants is to return home and play with her dolls, a simple childhood pleasure now dependent on finding a selfless stranger willing to register as a donor.

The Power to Save a Life

“For children like Dianty and Nqobimpi, a stem cell transplant from a matching donor is their only hope for a cure,” highlights Palesa Mokomele, Head of Community Engagement and Communications at DKMS Africa. Every new person who registers brings fresh hope to them and the many other patients waiting for a lifeline.”

“On this World Children’s Day, as we reflect on the rights of every child, consider giving the ultimate gift: the right to life,” she concludes.

Register today at https://www.dkms-africa.org/save-lives.

Aplastic Anaemia: A Stem Cell Donor Is the Difference Between a Future and a Fight for Life 

Both Leathan (L) and Godfrey (R) have aplastic anaemia, which can treated with a stem cell donation. Leathan received stem cells from his twin sister, who is a perfect match. But Godfrey must travels from KwaMhlanga to Pretoria for life-sustaining blood transfusions.

When aplastic anaemia struck two young South Africans, their fates diverged dramatically. While one received a life-saving stem cell transplant, the other continues to fight every day. The rare blood disease affects fewer than six people per million, but for Leathan and Godfrey, the statistics became deeply personal. 

Understanding Aplastic Anaemia: When Hope Meets Science 

Aplastic anaemia is a devastating condition where the bone marrow fails to produce sufficient blood cells, leaving patients vulnerable to infections, bleeding, and severe anaemia. Given this rare disease’s high mortality rates, prompt recognition and immediate action are critical for survival. “The challenge with aplastic anaemia is that early symptoms can be subtle,” explains Dr Gugulethu Jali, a Clinical Haematologist and Haematopathologist at the Department of Health Kwa-Zulu Natal. “However, advances in treatment, particularly hematopoietic stem cell transplantation (HSCT), have transformed the prognosis, with survival rates now exceeding 80% when matched donors are found.” 

Leathan’s Journey: From Crisis to Recovery 

Seventeen-year-old Leathan had his whole life mapped out. The passionate soccer player dreamed of becoming a criminal lawyer, balancing his love for the game with serious academic ambitions. But subtle symptoms began to appear, including weight loss and nosebleeds that seemed minor at first. 

When he suddenly collapsed at home, his family rushed him to hospital where doctors discovered his blood levels were critically low. Tests revealed that his bone marrow had completely stopped producing blood cells. Without immediate intervention, he would need blood transfusions and platelets for the rest of his life. 

But Leathan had something that changes everything in aplastic anaemia cases: a perfect genetic match. His twin sister, without hesitation, donated her stem cells , giving her brother the ultimate gift of life. 

Today, Leathan represents the success story that medical advances have made possible. Since the transplant, he has not needed further transfusions, and his blood counts are steadily stabilising. However, he may still need additional stem cell support to fully restore his health.  

Currently, he’s on the path back to his soccer dreams and law school aspirations, a living example of what’s achievable when the right match is found. 

Godfrey’s Battle: The Same Disease, Different Circumstances 

While Leathan’s recovery shows what’s possible, eleven-year-old Godfrey from KwaMhlanga, Mpumalanga, is still living with the daily reality of aplastic anaemia. Like Leathan, Godfrey was once full of energy and loved soccer. 

Then the familiar pattern began to emerge: Godfrey started moving more slowly, struggling with everyday tasks that once came easily. When uncontrollable bleeding began, his family knew something was seriously wrong. After a long diagnostic journey that began in 2019, Godfrey received the same diagnosis Leathan had faced: aplastic anaemia. 

Unlike Leathan, Godfrey doesn’t have a twin sister who’s a perfect match. Instead, every month, he travels from KwaMhlanga to Pretoria for life-sustaining blood transfusions. The physical and emotional toll has been devastating. He was unable to pass Grade 5 last year, not because he lacks ability, but because fighting for your life leaves little energy for schoolwork. 

Your Role in Changing Godfrey’s Story 

For Godfrey to follow the same path as Leathan, he needs his genetic match. That person could be you. 

Compatible donors are often found within similar ethnic backgrounds, making diversity in donor registries crucial for patients like Godfrey. If you’re between 17 and 55 and in good health, registering as a stem cell donor takes minutes and costs nothing. Register today at https://www.dkms-africa.org/save-lives.  

A Right to Life: Ensuring Access to Stem Cell Transplants for SA’s Children

Photo by Jeffrey Riley on Unsplash

Every year, hundreds of South African children courageously battle blood disorders which are treatable through stem cell transplants. Yet, while at least 250 paediatric transplants are needed annually, only 18 are performed – leading to survival rates of just 20%, compared to 80% in countries like the USA and Europe.

Ahead of Human Rights Day, Palesa Mokomele, Head of Community Engagement and Communications at DKMS Africa, highlights the urgent need for action: “Every child has the right to healthcare, which should include stem cell transplants. By working together – government, healthcare providers, and the private sector – we can remove the barriers preventing children from receiving the treatment they need.”

Overcoming Barriers to Life-Saving Transplants

Mokomele notes that while there are challenges, there are also solutions. “By addressing issues such as financial constraints, medication shortages, and limited infrastructure, we can ensure that more children receive these vital treatments. Through collaboration, we can create meaningful change.”

Addressing the Cost Challenge

One of the major hurdles in providing this life-saving treatment is the high cost of stem cell transplants, which ranges from R1 million to R1.5 million. “When a child has a matching family donor, the public healthcare system covers their transplant fully. However, for the 70% of patients who require an unrelated donor, the state covers the transplant, but not the additional costs of finding and securing a suitable donor such as tissue typing, donor searches, and stem cell procurement.,” explains Mokomele.

“Public-private partnerships, however, can ensure that all associated costs are also covered,” she points out. “Together, we can make a difference in the lives of children who need these life-saving procedures. To be effective, we must collaborate more closely and take a holistic approach.”

Building Medical Expertise

“South Africa is challenged by the lack of clinically skilled haematology nurses and clinical haematologists, but we are looking into how ways to increase capacity at this level. Training and scholarships for medical and non-medical staff in haematology and transplantation can improve the level of care provided,” says Mokomele.

She outlines some of the work of non-profit organisations like DKMS Africa in supporting knowledge transfer initiatives for healthcare professionals. “Through a combination of theoretical courses, hands-on observerships, or a hybrid of both, we aim to enhance patient outcomes. We also frequently host and participate in symposia for the medical community to exchange knowledge and explore best practices, which are essential for providing the highest quality care.”

Encouraging Donor Commitment

A strong donor registry is crucial, yet despite DKMS Africa recruiting over 100 000 potential donors, 56% of those matched decline to donate when called upon. “Becoming a donor is a powerful act – it’s a chance to give a child a second chance at life,” urges Mokomele.”

Expanding Transplant Capacity

Increasing the number of transplant beds is another crucial step. Currently, only four paediatric transplant beds are available in public transplant centres – two in the Western Cape and two in Pretoria. However, she shares encouraging news: “We are in conversations with the private sector to support the expansion of more beds in Gauteng, where the bulk of patients reside. This expansion represents a crucial step toward improving access to care.”

A Call to Action: How You Can Help

“The progress we’re seeing is promising. Together, we can ensure that no child is denied a life-saving transplant due to financial, medical, or infrastructure constraints,” concludes Mokomele. “Whether by registering as a donor, supporting fundraising efforts, or advocating for policy changes, every contribution makes a difference. With collective effort and commitment, South Africa could transform paediatric stem cell treatment – offering hope, healing, and a future to the children who need it most.”

The Truth About Bone Marrow Stem Cell Donation

SAG Leukaemia. Credit: Scientific Animations CC0

While thousands of South Africans have registered as potential bone marrow stem cell donors, a critical challenge looms: donor attrition. These dropout rates, ranging from 23% to 56%, can significantly delay finding a suitable match for blood cancer patients in desperate need of a potentially life-saving transplant. This can unfortunately impact their chances of survival.

The good news is that donating stem cells is a safe and relatively simple process. With Bone Marrow Stem Cell Donation and Leukaemia Awareness Month taking place between 15 August and 15 October 2024, DKMS Africa aims to address some misconceptions that might deter registered donors from following through with donations.

Palesa Mokomele, Head of Community Engagement and Communications, unpacks these below:

Myth 1: Donating stem cells is a painful surgical procedure.

Fact: For over 90% of donors the process entails Peripheral Blood Stem Cell (PBSC) collection, a non-surgical procedure similar to donating blood. During PBSC, donors will rest comfortably while a needle is placed in each arm. Blood is drawn from one arm, passed through a machine that separates the stem cells, and the remaining blood is returned to the body through the other arm. While not painful, some donors may experience mild side effects like headaches, fatigue, or muscle aches, which typically resolve quickly.

For a small percentage of donors (around 2%), stem cells might be collected directly from the bone marrow in the pelvic bone. This minimally invasive procedure is performed under general anaesthesia. Although some donors experience temporary discomfort or soreness at the extraction site, the feeling is usually comparable to a bruise.

Myth 2: Donating takes too long and disrupts my life too much.

Fact: While the donation process involves some steps, it’s designed to be manageable. You’ll likely have a briefing call to explain the process, a health check to confirm your suitability, and an informative session about donation itself. The actual donation typically takes less than a day (4-6 hours) for the PBSC method.

For the bone marrow donation method, a hospital stay is involved, but it’s usually just three days. This includes check-in on day one, the procedure on day two, and discharge on day three.

Myth 3: Donating stem cells means missing a lot of work. 

Fact: The good news is that most donors can get back to work quickly. For PBSC donation, donors will likely be able to return within two days. If they donate bone marrow, a bit more recovery time is needed, so they should plan for about one week of leave.

Myth 4: My boss won’t be okay with me taking time off to donate.

Many employers are incredibly supportive of staff who donate stem cells. In our experience, most react positively to this selfless act. If your company doesn’t offer paid leave for donation, DKMS has a financial assistance programme that deals with lost wage compensation.

Myth 5: Donating stem cells will cost me money.

Fact: Donation is completely free of charge for the donor. DKMS covers all donation-related expenses, including travel, meals, and accommodation if needed. Financial support is also provided for a companion to join them at the hospital. The donor’s health insurance will never be involved, and DKMS handles the costs of any follow-up care that might be necessary.

“Seventeen-year-old Anele who was diagnosed with Acute Lymphoblastic Leukaemia (ALL), a type of cancer that affects the production of healthy blood cells, is just one of many patients in need of a stem cell transplant from a matching donor,” says Mokomele. “His father, Lawrence, is devastated, with his son now hanging on for dear life, waiting for that one person to be a match.”

“Every registered donor brings hope to a patient battling blood cancer. By staying committed to the cause, you help to ensure a readily available pool of potential matches, increasing a patient’s chance of receiving a transplant. Let’s give them a second chance at life!” she concludes.

Register today at https://www.dkms-africa.org/register-now

For more information, contact DKMS Africa on 0800 12 10 82.