Sian Chathyoka, 56 from Swansea, was diagnosed with myelofibrosis, a rare blood cancer, in September 2025.
The single mum of two, who runs a seaside campsite with her family, was experiencing extreme fatigue before tests revealed that she had an aggressive form of myelofibrosis.
“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,” she said.
Since Sian’s diagnosis she has been having weekly blood and platelets transfusions, but she has been told that she will need to have a stem cell transplant from a matching donor to survive.
Before falling ill, Sian was very active, swimming in the sea in all weathers, managing the family business and caring for her two children aged 18 and 13.
Sian, who was a social worker for many years, first noticed something was wrong when she could no longer do her outdoor swimming or mow the grass.
After being unable to get up from a chair and realising that she had lost 5lbs unintentionally, Sian went to the GP in August and was sent for blood tests immediately. “They came back and they were scattered all over the place,” Sian said.
Sian was then sent for a CT and MRI scan which revealed an enlarged spleen, before being referred to the haematology department and being diagnosed with myelofibrosis. “I couldn't stop crying,” she said.
Sian is currently undergoing treatment to shrink her enlarged spleen. “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,” she said.
In early January Sian received the news that there is one matching donor for her on the worldwide registry. Sian was shocked that only one person on the register has the potential to save her, so is encouraging more people to sign up as she prepares to have a stem cell transplant from a selfless stranger.
“I'm lucky. I'm grateful that there is the possibility of a cure through a stem cell transplant.”
“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 is working 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: “It’s thanks to patients like Sian sharing their story that we can raise vital awareness of stem cell donation and encourage more people to join the register and save lives.
“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.”
ENDS
For more information, and to enquire about media interviews, please contact the Anthony Nolan press office using press@anthonynolan.org or 020 7424 1300.
Out of hours, contact the duty press officer on 07881 265 285.
NOTES TO EDITORS
Please note: Anthony Nolan changed its name in 2011 and is no longer known as Anthony Nolan Trust.
About Anthony Nolan
Anthony Nolan is a UK stem cell transplant charity with 50 years of expertise in uniting science and people to push the boundaries of what can be achieved for blood cancer and blood disorder patients.
Its world-leading stem cell register matches potential donors to patients in need of transplants. It carries out cell and gene therapy research to increase transplant success and supports patients through their transplant journeys.
Anthony Nolan helps four people in need of a transplant a day, giving more people a second chance at life. But the charity won’t stop until all patients have access to the treatment they need, so many more survive.
Stem cells hold enormous potential and have the power to help people with blood cancers and blood disorders. This potential inspires everything Anthony Nolan does. Driven by patients, backed by stem cell donors, and powered by science, the charity won’t stop until the lifesaving potential of the cells inside us all has been uncovered.
Join Anthony Nolan’s register or support its research. Together, with your help, Anthony Nolan can unlock the answers inside us anthonynolan.org
What is a stem cell transplant?
If a patient has a condition that affects their bone marrow or blood, then a stem cell transplant may be their best chance of survival. Doctors will give new, healthy stem cells to the patient via their bloodstream, where they begin to grow and create healthy red blood cells, white blood cells and platelets.
Key statistics
- Since it was founded by Shirley Nolan in 1974, Anthony Nolan has facilitated over 28,400 transplants for people around the world.
- The charity facilitates around 1,200 stem cell transplants from an unrelated donor every year for patients in the UK and more than 300 for patients abroad. For many, a transplant is their last chance of survival.
- Around 90% of donors donate through PBSC (peripheral blood stem cell collection). This is a simple, outpatient procedure. Donors are supported throughout the process by the Anthony Nolan team.
- Currently 15% of the UK Anthony Nolan stem cell register is made up of young men, but they account for more than half of people called upon to donate.
- There is a pressing need to recruit more people from diverse backgrounds to the Anthony Nolan register, to help more patients from minority ethnic backgrounds find the lifesaving matches they need.
- Blood cancer is the fifth most common type of cancer in the UK and the third biggest cancer killer. It accounts for 9% of all new cases of cancer diagnosed in the UK.
- Sickle cell disease (SCD) is a group of inherited blood disorders that affect the red blood cells in your body.
- It mostly affects people from African and Caribbean backgrounds and can be diagnosed soon after birth.
- People with SCD produce red blood cells in the shape of a ‘sickle’. These unhealthy cells stick together and get stuck in blood vessels, blocking the flow of healthy blood cells, which can cause various health complications and acute pain episodes
- To join the Anthony Nolan register, you must be 16-30. Anthony Nolan’s world-leading Research Institute has shown younger donors offer better survival rates for patients.