The mum-of-two was diagnosed with a rare blood cancer last September
A mother is calling on people to join the stem cell register after being left ‘shocked’ to discover that just one person could potentially save her life following a diagnosis of blood cancer so rare that she is the sole patient in Swansea and Cardiff. Mum-of-two Sian Chathyoka has been dependent on weekly blood and platelet transfusions to keep her alive while she awaits her stem cell transplant.
She said: “What I have realised throughout this process is that nobody knows about stem cell transplants. A lot of my friends didn’t have a clue. That’s why I want to raise awareness by sharing my story.
“Health is wealth and it is a luxury to be grateful for. Just signing up to the register, you can literally save a life. I feel really emotional because that’s as powerful as it is.”
Before becoming unwell last year, Sian led an incredibly active lifestyle. She regularly swam in the sea, ran a seaside campsite alongside her family, and looked after her two teenage children as a single parent.
The former social worker sensed something was not right when she found herself unable to continue with outdoor swimming. After her exhaustion became so severe that she struggled to rise from a chair, Sian visited her GP.
She revealed: “Since August, I’ve just been lying in bed because I’ve had no energy. I’ve had such a level of fatigue, I haven’t been able to do anything, and it’s been quite scary.”
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Sian was promptly referred for blood tests which showed alarming results, followed by numerous additional examinations that ultimately confirmed a myelofibrosis diagnosis. She remembered: “I couldn’t stop crying. My condition is very rare. I am the only myelofibrosis patient they’ve got in Swansea and Cardiff, and I’ve been told my disease is aggressive as well.
“It’s very difficult to be upbeat and positive. When you take away the layers it’s absolutely petrifying. But you’ve got to forget about that and be positive.”
Since receiving her diagnosis, Sian has depended on weekly blood and platelet transfusions, alongside treatment aimed at reducing her swollen spleen. Medical professionals informed her that survival will require a stem cell transplant from a compatible donor.
At the beginning of January, Sian was stunned to learn that across the global stem cell registry, only one matching donor exists for her.
She said: “I’m lucky. I’m grateful that there is the possibility of a cure through a stem cell transplant.”
Sian has joined forces with stem cell transplant charity Anthony Nolan on a campaign called SignUpForSian, aimed at encouraging more individuals to register and potentially save lives.
Rowena Bentley, Head of Programme and Community Recruitment at Anthony Nolan, said: “Becoming lifesaver ready is easy, just head to the Anthony Nolan website to fill out a short online form, you’ll be sent a cheek swab and when you send it back freepost you will be added to the stem cell register and be ready to save a life like Sian’s.”
