Tag: aplastic anaemia

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.  

More Stem Cell Donors Needed to Increase the Aplastic Anaemia Survival Rate

Photo by National Cancer Institute on Unsplash

Despite being one of the rarest blood disorders, Aplastic Anaemia is one of the deadliest, with about 70% of patients having a life expectancy of only one year if untreated.

Among the treatment options available, stem cell transplants offer hope, boasting a 96% survival rate that increases to 100% in children and adults under 40. Unfortunately, however, there are only 76 019 donors on the South African registry, meaning that the chances of Aplastic Anaemia patients finding a suitable match are slim.

“The chances are even slimmer for Black Aplastic Anaemia patients as only 33% of the registry is comprised of Black donors,” says Palesa Mokomele, Head of Community Engagement and Communications at DKMS Africa, who explains that a patient’s best chance of a match comes from within their own ethnic group.

Currently, the non-profit organisation is trying to find matching donors for at least seven South African Aplastic Anaemia patients between the ages of seven and 36. Some of these patients, like 21-year-old Kholiwe, have been on the waiting list since as far back as 2020.

During her matric year, she started experiencing symptoms and after being rushed to the hospital following a fainting spell, received the shocking diagnosis. Compounding the situation for the aspiring drama student was the withdrawal of support from her family, leaving her all alone to cope emotionally and financially with the disease. As she waits for a matching donor to be found, Kholiwe now has the challenge of finding permanent employment while simultaneously undergoing medical treatments to keep her alive. Despite these hardships, she remains hopeful about finding a matching stem cell donor. “Kholiwe’s future, and those of other Aplastic Anaemia patients, depends on this,” says Mokomele.

Explaining what Aplastic Anaemia is, she shares that, based on information gathered by DKMS Africa in conjunction with BLOODSA, the condition occurs when our bone marrow stops making enough blood cells. “This can lead to anaemia, a weak immune system, and an increased risk of bleeding and bruising.”

As for the cause of Aplastic Anaemia, Mokomele points out that this is due to bone marrow damage. “While some people are born with compromised bone marrow, others develop this as a consequence of pregnancy, genetic disorders, certain medicines or chemicals, an overactive immune system or viral infections such as HIV and Hepatitis.”

In light of Aplastic Anaemia Awareness Day on 4 March, she encourages all South Africans to familiarise themselves with the symptoms. “These include tiredness; feeling weak; pale skin and tongue; bruising and bleeding easily; rapid heartbeat; trouble breathing; frequent infections; headaches and dizziness.”

Similarly, 10-year-old Mesuli’s experience highlights the challenges faced by Aplastic Anaemia patients and their families. His journey began with drastic weight loss and constant fatigue. The once energetic and always bubbly little boy grew weak and started having severe nose bleeds. That’s when his aunt Nonhle, who is caring for him following the passing of his mother, consulted a doctor. With his illness forcing him to leave school, Mesuli’s new reality consists of going to the hospital every Wednesday for a blood transfusion.

“It hurts to see him in pain because it hurts me too. All I want is for him to grow and live out his dreams. I am begging each South African to think of Mesuli, spread the word and get your family and friends registered to help save the life of my boy. His life hangs in the hands of a perfect stranger,” pleads Nonhle.

Mesuli hopes to one day become a doctor and save lives, the same way he hopes his life will be saved.

“Bearing Aplastic Anaemia Awareness Day in mind, we encourage South Africans to pay close attention to their health and that of their loved ones, especially as the rarity of the disease does not diminish its severity. But, more importantly, we need those who are healthy to register as stem cell donors and save the lives of patients with this deadly disease,” concludes Mokomele.

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

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