Patient Stories
Diagnosed with a rare blood disorder at just four years old, Zyaan Makda spent much of her childhood in hospital. Following a successful stem cell transplant, she now has her whole life to look forward to.
“I don’t think I fully understood the extent of my disease until I grew up,” says 20-year-old Zyaan Makda about living with a rare blood disorder. “It was hard for me because, I could never do the things that other children could, like playing outside or running around. My life was simply different to other kids.”
Zyaan was just four years old when she was diagnosed with thalassaemia, a nearly incurable blood disorder. During a family holiday, her parents noticed strange, unexplained bruises all over her body. She had also been experiencing stubborn earache. The diagnosis was the kind of news that every parent dreads.
“Thalassaemia is a rare, inherited disorder of red blood cells,” explains clinical haematologist Dr Gerdener, medical director at DKMS Africa, formerly the Sunflower Fund. “Red blood cells carry oxygen to provide energy throughout the body. They do this through binding oxygen to a molecule called haemoglobin. In thalassaemia, a patient has genetic mutations which cause the body and red blood cells to produce far less haemoglobin than it should. Patients with thalassaemia are severely anaemic, which means they have too few red blood cells and haemoglobin to transport the oxygen effectively throughout the body.”
A person with thalassaemia needs to go for frequent blood transfusions. “The side effect is severe iron overload, which might affect the heart, liver, pancreas, skin and other organs,” says Dr Gerdener. Zyaan spent most of her childhood going for blood transfusions every two weeks. “As a result of the treatments, the veins in my hands collapsed and I had a port put in my chest. I also experienced constant fatigue. I had my gall bladder and gall stones removed and also suffered from an under-active thyroid,” she recalls.
Yet, through it all, Zyaan managed to remain positive. “I always had a smile because I had a wonderful support structure, which was my family. Every hospital appointment, every procedure and every operation, I was always surrounded by the love of my family. They never let me lose hope for a second.”
There is one way to combat thalassaemia. “A stem cell transplant is the only way of curing thalassaemia and preventing life-threatening complications associated with the iron overload,” says Dr Gerdener. However, the chances of finding a donor match are tiny.
“Looking for a matching stem cell donor is like looking for a needle in a haystack,” says Traci Sassenberg, Team Leader: Marketing and Communications at DKMS Africa. “Only 30% of patients find a matching donor within their family – the other 70% rely on a donation from a stranger.” Formerly The Sunflower Fund, DKMS Africa is part of a global network that helps match people in need of blood stem cell transplants with viable donors, as well as raising funds for donor registration and transplant procedures where they’re needed. A donor’s tissue characteristics must very closely resemble those of the recipient – but with humans being so genetically diverse, that’s a tough ask.
“When we started our search, we were not able to find a blood stem cell donor and my siblings were not a match. Thinking back, I can say we all gave up hope of finding a donor,” Zyaan says. In the meantime, she was finding it difficult to manage at school. “I was frequently absent for medical reasons and could not take part in sports. My condition also caused memory loss and seizures. Sometimes I would have a seizure while writing an exam. Eventually, I was forced to take more than three years off from school.”
Zyaan was 15 when her oncologist called with the news they’d found a 100% donor match. “I had so many mixed emotions. I was happy and scared, but at the same time, I was excited at the possibility of a second chance at actually living my life,” she recalls. As part of the DKMS network, DKMS Africa has access to a global database of donors. Zyaan’s donor match, Marta Drożdż, was found in Poland. The transplant was performed by the expert team at Mediclinic Constantiaberg and it was a success.
Zyaan remains on medication and is still susceptible to seizures, but she has returned to school and is currently learning to drive and filling in university applications, just like any Matric learner. “My life was given back to me,” she says. “No more hospitals, no more operations and no more transfusions. The world is my oyster; I’m finally able to dream about my future. I’m finally living again, not just surviving!” And while she has dreams of travelling the world, she’s also determined to make a difference in it. “I need to give back; I wasn’t given a second chance to not make a difference in this world. I have been granted me this gift of life and I have no intention of wasting a single moment of it!”
Register as a donor
The bigger and more diverse the DKMS register becomes, the more chance there will be of them reaching their goal to help every patient in need of a transplant find a suitable donor as quickly as possible. To become a donor, register here.