Following a diagnosis of chronic myeloid leukaemia (CML) in April, Natassa Adamou was told two weeks ago her condition has progressed to acute lymphoblastic leukaemia (ALL.) To treat this rare blood cancer Natassa, now 19, needs chemotherapy and a stem cell transplant from a matching donor.
Since the ALL diagnosis Natassa’s older sister, Sofia, has taken to social media to encourage those eligible to sign up to the stem cell register. Sofia’s social media campaign highlights how anyone could be a lifesaving match for someone with a blood disorder or a blood cancer like her little sister.
“You never think it's going to be you or your family until it is, and then it's like your whole world is just turned upside down,” said Sofia, a business owner from Anerley, South London who has been working with stem cell transplant charity Anthony Nolan.
Natassa, who her sister describes as a bubbly personality with a passion for theatre, reading, and Formula 1 was studying to be a certified makeup artist, specialising in prosthetics and special effects, before she began experiencing symptoms last Christmas including extreme tiredness and a seizure.
Extensive tests resulted in a diagnosis of CLL which was being treated with chemotherapy tablets up until earlier this month when Natassa became unwell. Two weeks ago, she was told that her condition has developed into ALL which needs to be treated with chemotherapy and ultimately, a stem cell transplant.
Sofia is waiting to see if she is a match, and can donate her stem cells to her sister, “If I am a match, that would be the best thing in the world and I'll be able to save my sister's life,” she said.
If Sofia is not a match, Natassa will need an unrelated donor. The donor will be somebody who has signed up to a stem cell register like Anthony Nolan.
“I am trying to get social media up and I'm trying to basically prepare,” Sofia said. “I know in doing this I'm not just helping my sister; I am helping many other people that are looking for donors,” she added.
Referring to her Instagram video which had 85,000 views in three days Sofia said, “Whether that helps my sister, or it helps someone else it’s important to do. Miracles can happen. You never know you might have a friend that might be a match, and you never would have met that friend if it wasn't for something that you did in your life. Life has a very mysterious way of doing things.”
Rowena Bentley, Head of Programme and Community Recruitment at Anthony Nolan, said: “Natassa’s family are doing an incredible job in spreading the word about the stem cell register, and Sofia is right, it only takes one person to sign up and potentially save a life like Natassa’s.
“Our research shows that younger stem cell donors give patients the best chance of survival, that’s why we’re calling on healthy 16–30-year-olds to join the Anthon Nolan stem cell register. The more people we get on the register, the more matches we can make, and the more lives we can save.
“Signing up is easy, it’s a quick questionnaire and a simple swab then you are lifesaver ready.”
Sofia and her family, who have owned the Marlow Fish Bar on Marlow Road in Southeast London for 63 years, are appealing for signups to the register not just in the UK but in Cyprus too due to their Cypriot heritage.
People with heritage from different parts of the world can have a different chance of finding a matching unrelated donor. This is because you can be more likely to have a rare tissue type if your ancestry is from particular regions of the world.
Since her sister’s blood cancer diagnosis Sofia has realised the lack of awareness around stem cell registers and donation. Talking about the process of swabbing your mouth to sign up to the register she said, “It takes 60 seconds of your day but could potentially save someone’s life.”
People can sign up online: anthonynolan.org/natassasmissiontoremission
In addition to growing and managing the world’s first stem cell register Anthony Nolan also carries out innovative research and provides information and support to stem cell transplant patients and their families
People who are unable to join the Anthony Nolan register, or are aged 31 and over, can support the charity’s work financially. It costs Anthony Nolan £40 to add each new potential lifesaver to the register which covers recruiting a donor, collecting their sample, and analysing it to find out their tissue type.
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.
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
- Founded by Shirley Nolan in 1974, Anthony Nolan celebrates its 50th anniversary this year.
- The charity facilitates around 1,100 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.
- Since its inception Anthony Nolan has facilitated over 26,500 transplants for people around the world.
- 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 16% 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.
- To join the Anthony Nolan register, you must be 16-30 and healthy. Anthony Nolan’s world-leading Research Institute has shown younger donors offer better survival rates for patients.