When Luca was battling Leukaemia and the years after he passed away I was very active with promoting Anthony Nolan. This UK blood cancer charity helps to match individuals willing to donate their stem cells to people with blood cancer who need lifesaving transplants. I can’t praise them enough for the help and support they gave us during the worst time in our lives. As well as joining the register, we encouraged family and friends join and we were very vocal about how easy it is to sign up and eventually donate if needed. Several half marathons and running the London marathon in-between pregnancies also helped to raise money and awareness.
I regularly went into schools and collages to give talks to 16-18 year olds about blood, organ and stem cell donation with Register and Be a Lifesaver (R&Be). This was an incredibly difficult and draining thing to do, but so worth it! Giving that education and dispelling myths about the whole process was very rewarding. Then with caring for two small babies made it difficult to volunteer as much as I would have liked. My passion hasn’t wavered in that time. I still want to encourage as many people as possible to join the register and to donate blood regularly as this can save up to three lives each time and is also essential during long standing disease.
Luca had a cord blood transplant around three months into his treatment. This bag of stem cells came all the way from Miami and I will explain further down the difference between the two. We were lucky we found donor relatively quickly, for other people it isn’t so easy. The cancer Luca had was very aggressive and he put up an incredible fight. There is also no doubt that the stem cell transplant gave us extra precious time with him.
I received this tweet a few weeks ago and it literally stopped me in my tracks. I just stayed still and silent while I read it over and over again. Over the years I have received hundreds of messages from Liverpool FC fans or teenagers from the talks I used to give. Mainly to tell Brad and I they had joined the register from seeing our charity work, or donated blood. I even had a few to say they had been lucky enough to donate stem cells. To receive this message though, well it was incredible and a privilege. That the person in question and that person was a child made me really emotional.
“Your campaign for Luca led me to register with Anthony Nolan and ultimately make a stem cell donation to a kid in France. The little one is alive and well now and happy to send letter updates to me” Andy via Twitter (2018)
Every 20 minutes someone in the UK finds out they have blood cancer. For someone with blood cancer a stem cell donation might be their last chance of life. Even though there are 27 million people on the register worldwide, this isn’t enough. Many people still can’t find a matching donor, and the stress this brings to patients and families is immeasurable. The overwhelming majority of people will not find a match from a sibling or relative, so the national database is where most donors will be found.
When you join a stem cell register you will get send a swab pack in the post. Your details are stored and you only get contacted if you are a match for a patient in need. It is very unlikely that you will ever be asked to be a donor, around 1 in 800 will be a potential match. However your chance of being chosen to donate depends on your age and sex. Young men only make up 15% of the Anthony Nolan register, but they provide an astonishing 54% of current donations.
Currently, only 60% of patients can find the best possible match for a stranger. This drops dramatically if you’re a patient from a black, Asian or minority ethnic (BAME). In short, worldwide we need more young people specifically men, more BAME and more expectant mums to donate their cord blood.
Stem Cell Donation
A survey to find out why young men weren’t going the register found these results:
- 28% were scared that donation would be painful
- 22% were squeamish about needles
- 25% didn’t know what stem cell donation was
During the talks I gave I would ask students to raise their hand if they were scared on needles. I would then ask again if they had a piercing or tattoo. Quite a majority raising their hands to both questions! Luckily the lack of awareness is something that can easily be changed.
Peripheral Stem Cell Donation
90% of collections are done by Peripheral Blood Stem Cell (PBSC). Its a quick and simple process similar to giving blood. Before donating a nurse will come to your home or office and administer injections to boost your stem cells. Then the donor goes to a specialist centre where your stem cells will be collected via the arm. There can be some side effects like mild aching and tiredness, but after a couple of days this goes. Donating takes 4-5 hours and you can go home that day.
A friend of mine who donated told me he sat on a bed, watched tv and ate lots of biscuits! The father says it was one of the most rewarding things he has ever done. He is an Everton football fan and eventually met his recipient a few years later. Just so happened the guy was a Chelsea fan! The story was well publicised and they went to Goodison Park to watch Everton vs Chelsea. Incredible story of a selfless act that saved a strangers life. Click here to read their story
Bone Marrow Donation
The other 10% of people donate from their bone marrow taken from the back of the hip bone. This procedure is done under general anaesthetic and a syringe with take out the blood stem cells. The donor will stay in hospital overnight and can return to normal activities under a week. Bruising and tenderness are the most the common complaints.
Cord Blood Donation
Giving life twice one day! Cord blood is the placenta and umbilical cord, which would normally be thrown away. They are rich in stem cells and could save someones life. Cord blood has a lot of advantages, it is immediately available for use after collection. Getting adult donations can be a long process, running the tests, the donation and then getting the stem cells to the patient within 72 hours. Another benefit is the stem cells don’t have to be an exact match, the cells are immature so can develop to suit their recipient. This also means it is easier to find matches.
All the register have slightly different criteria for joining, but all include a short health questionnaire. You only need to be on one register worldwide. Please consider joining a register (you only need to be on one register worldwide) and potentially saving a life. Registers for the UK and Netherlands are listed below, please see their websites for more information.