Sian just found out there’s a single donor on the worldwide registry that could help her
A mum is urging people to sign up to the stem cell register after being ‘shocked’ to find there’s only one person that could save her following a blood cancer diagnosis so rare that she is the only patient in Swansea and Cardiff.
Mum-of-two Sian Chathyoka has had to rely on weekly blood and platelet transfusions to survive the condition as she waits for her stem cell transplant. She shared: “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.”
Sian was incredibly active before falling ill just last year. She often swam in the sea, managed a seaside campsite with her family and cared for her two teen children as a single mum.
The former social worker noticed something was off when she could no longer do outdoor swimming. Sian went to the GP after her fatigue became so bad she struggled to get out of a chair.
She shared: “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.”
Sian was immediately sent for blood tests that were “all over the place” followed by a slew of other tests that eventually led to a myelofibrosis diagnosis.
She recalled: “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.”
Sian has relied on weekly blood and platelet transfusions since her diagnosis, as well as treatment to shrink her enlarged spleen. She was told she’ll need a stem cell transplant from a matching donor to survive.
In early January, Sian was shocked to discover that in the worldwide stem cell registry, there is just one matching donor 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 teamed up with stem cell transplant charity Anthony Nolan on a campaign entitled SignUpForSian to encourage more people to join the register and save a life.
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.”
