I’m Sean, and back in 2012 I donated my stem cells to a father of two, Johnny Pearson. Three years later, he’s still alive – and we ran the London Marathon together last year! (He was quicker - https://www.youtube.com/watch?v=1kQuecUjA_E)

And I’m Ethan. Last year I donated my stem cells via the old-fashioned method (bone marrow extraction, general anaesthetic). I was 17, which makes me the youngest bone marrow donor in the UK, ever. http://www.bbc.co.uk/news/uk-england-nottinghamshire-29114638

We’ve also got Ann from Anthony Nolan (the UK’s biggest stem cell donor register www.anthonynolan.org) on hand to answer any questions about the charity’s work or the science if necessary.

Our individual comments will be tagged at the end like this -Sean or -Ethan.

Edit: We forgot to say we'll be here answering your questions from 3-5pm GMT today

Edited at 5pm GMT: Thanks so much to everyone for your questions! We won't be answering live now, but if any questions come in overnight we can answer them tomorrow morning.

If you'd like to sign up as a donor, you can see a list of all the registries in the world here: http://www.bmdw.org/index.php?id=addresses_members&no_cache=1


Sean: http://i.imgur.com/f6zGAel.jpg?1

Ethan: http://i.imgur.com/OQ6l3aD.jpg

Comments: 54 • Responses: 24  • Date: 

butternut_squashed9 karma

Well done to both of you for your donations!

My husband and I have been on the Bone Marrow register for about 6 or 7 years and would love to get 'the call up'. we've both got a fairly unusual mixed ethnicity, is it true that I could only be matched with someone of the same ethnic make up? How specific does the 'match' have to be?

AnthonyNolan8 karma

Answer from Ann at Anthony Nolan:

Donors and recipients are matched on something called 'HLA' (Human Leukocyte Antigen) and this is inherited. The most likely match is usually someone from a similar ethnic background. So yes, if you were to come up as a match it would probably be for someone who is also mixed ethnicity. But the most important thing is that you are on the register in the first place and you're there if someone if you ever come up as their match! - Ann

dwiggitypoo4 karma

First off, Congratulations to the Both of you for being amazing, and selfless people!! No words can describe the greatness of your actions.

My first question to the both of you is, What kind of preparations did you have to take prior to donating? (I.E foods, sleep regiment, exercise)

My second one is, What kind of struggles were you faced with after the procedure? (Physical, mental.. even appetite)

Last one! (sorry :P) would you do it all again?

AnthonyNolan6 karma

Answer from Sean:

Q1 - I didn't really have to do any preparations prior to donating, other than having the course of injections (2 a day for 3 days) that are part of the procedure before the actual donation (and are pain free!). Other than that it was just any normal day.

Q2 - I didn't have any struggles afterwards other than desperately needing to go to the toilet!!! My procedure is very similar to giving blood but lasted for 4 hours so the toilet was the first place I went afterwards ha. My appetite wasn't affected in any way, I was in Nandos that very same evening having plenty of chicken and a few pints of beer! And mentally I feel great, I do feel very proud but I must stress how easy the whole thing was!

Q3 - I would absolutely do it all again, something so simple that has had a massive impact on someone's life - it's quite amazing and Id love to do it again. - Sean

AnthonyNolan4 karma

Answer from Ethan:

Hi, to be honest I did no preparation before hand, It wasn't necessary. The only requirements were to be generally healthy. I had to have a medical examination to determine this. Secondly, I didn't really have any struggles, I had some slight pain on my lower back from the operation but that was just something that was easily dealt with by paracetamol. Thirdly, yes! It really wasn't much trouble at all to do. - Ethan

Kersplit3 karma

Thank you for donating. My mother passed away from leukemia about a year ago. She was lucky enough to have been matched but died before she could receive the transplant.

I think it is really great that you guys stepped up and helped to save some lives. I hope to join you in donating someday.

My question: I live in the US - Does Anthony Nolan only operate in the UK or is it in other countries?

In the US the biggest organization seems to be Be The Match

AnthonyNolan3 karma

Answer from Ann:

We're so sorry to hear about your mum and that she wasn't able to receive her transplant.

Anthony Nolan just operates in the UK. You're right, Be The Match registers potential donors in the US. We work closely with Be The Match and with registries all over the world to make sure that we can provide stem cells for patients, no matter where the donor is in the world. - Ann

AnthonyNolan3 karma

There's a list of all the registries in the world here: http://www.bmdw.org/index.php?id=addresses_members&no_cache=1

You can also visit the World Marrow Donor Association here: https://www.wmda.info/ - Ann

jdc1223 karma

Hey guys!

So I signed up for Anthony Nolan a few weeks ago, can you tell me what the process is like when you find out you're a match? Can you run me through your head when you find out that you could save a life?

Also, is the old method the one where it's a big needle extracting from your hip? If so what is the new method and what are the pros and cons of each.

AnthonyNolan6 karma

Answer from Ann at Anthony Nolan:

Bone marrow donation used to be the only way to donate and this is where bone marrow is extracted from the hip bone under general anaesthetic. There are lots of myths about what's involved, but it's a really simple procedure (as Ethan will tell you!) and is very safe.

Peripheral Blood Stem Cell donation (PBSC) is the 'new' way of donating and actually 90% of people donate that way now. The donor is given a short course of injections (of a naturally occurring hormone) to encourage their body to produce more stem cells and then those stem cells can be taken from their bloodstream. This donation takes about 4-5 hours and is very straightforward (as Sean will tell you!). - Ann

leekwen2 karma

Can you explain why this hormone can't simply be injected into the recipient in order to generate his/her own stem cells?

AnthonyNolan3 karma

Answer from Ann:

When someone needs a transplant it is usually because they have a blood cancer or blood disorder and medical treatment will not work. So stimulating their body to produce more cells would also stimulate them to produce more harmful cells. Before receiving the donation, the recipient is given chemotherapy to prepare them for the transplant and wipe out all the harmful cells. And then the new cells and transfused and begin to do their work, building back the recipient's immune system. - Ann

AnthonyNolan2 karma

Answer from Ethan:

Hi, at first the process is to decide whether you want to donate. Some people sign up and then get a call up years later so don't still have the same mind set. Then your health is checked, I went down to the sane hospital that i donated in to have my blood taken and have various other tests. Then when you get the all clear the date is arranged fairly quickly afterwards so they can get the stem cells to the recipient as soon as possible. second part, It's a strange feeling! very surreal. As everything is done through Anthony Nolan, it never really sinks in fully the enormity of what you are doing! - Ethan

Answer from Sean:

I was on holiday with my mates when I first found out I was a possible match. When I returned to the UK, I went to my local hospital to have some blood samples taken just to confirm I was a good enough match. I then got a letter in the post a few weeks later to confirm everything was fine and they would like me to have a medical to check me over. Once done a date was set for my donation - February 1st 2012, a day I will never forget! Mentally, when I found out I could help save someone's life, I was really pleased because after all that is why I signed up to the register in the first place! A part of me was quite nervous which I think is only natural but I remember once I had done my donation thinking "is that it".... It really is so easy! - Sean

gooseoink2 karma

Well done to you both! My mum actually had a bone marrow transplant last year, so incredibly important so you've both done a brilliant, amazing thing! After you had donated, how often did you think or do you think about the recipient and how they're doing? or think about the impact of your gift on their lives and their families? And for Sean, how was it meeting Johnny?

AnthonyNolan1 karma

Answer from Ethan:

At the time of donation and weeks leading up to it, that was all I thought about. If I had any doubts about it, I would draw strength from the fact that some poor person out there is suffering so much and I could help. Im lucky to have not had to deal with Cancer much in my family, so its so hard to understand what kind of impact I made. I just really hope that my recipient can go and live a happy life now! - Ethan

AnthonyNolan1 karma

Answer from Sean:

I can say this with my hand on heart that from the day I donated I thought about my recipient everyday.

I remember being told it was important to realise that no matter the outcome, my donation gave this person and their family hope.

I didn't know anything about my recipient so it was hard to imagine the bigger picture of their family, friends etc cos I didn't know how old he was, wether he would have children, or wether he was just a young adult like myself.

It was only as time went on I started to think of the bigger picture. Again, meeting Johnny was another day that I will never forget.

We met at a hotel, 2 years after the donation and I remember being so nervous driving all the way there and knowing when I arrived that the person I helped was standing in the next room!

You can see the great video of us meeting for the first time and I think you can see on my face a bit of shock and nervousness as like I said I had never seen a picture or anything of Johnny and his family.

I laugh sometimes at the video because you can the hug we had was a little awkward, I literally didn't know what to do!

But it was fantastic to finally meet the person I had helped and I'm pleased to say me and Johnny are in regular contact and just this weekend met up! - Sean

(note from Anthony Nolan - you can see the video here: https://www.youtube.com/watch?v=ZHGGltpc7vs)

Condoleezza_Jesus1 karma

I was lucky enough to be able to donate this time last year via PBSC Donation.

Since then more passively I have managed to get about 3-4 people to sign up to the register just by sharing my views on donation overall. It's such a simple and easy thing to do, but how would you recommend getting others in your more immediate reach to sign up?

Great job guys. Glad to see you're both doing well.

AnthonyNolan2 karma

Answer from Ethan:

Well, i'm no expert in this but by sharing my story was really the best way. Theres so many myths surrounding stem cell donation, that by clarifying them it can really help.

It's tricky though because you have to be fully equipped with the facts to be able to successfully encourage people. So the best way is to just educate people and point them in the right direction! - Ethan

AnthonyNolan2 karma

Answer from Sean:

My friends, community and colleagues have been massively supportive of me throughout my whole donation experience. I think when I donated it made a lot of my friends realise just how easy it was, plus a lot of my mates went to the "signing up" event that I went to so they were all aware of what Anthony Nolan was all about.

All my friends have met my recipient, Johnny and I think that's when it opened their eyes and they realised how something so simple can have such a great outcome.

I also did some talks at my old school and college to share my experience and show that donating is not damaging or painful for the donor, you just have to separate the facts from the fiction!- Sean

Plutochk1 karma

Wow, amazing story!

Back in 2012 I was notified that I was a match for someone. Overjoyed I went through the various blood testing eager to help. Some months later I was told my services were no longer needed. Of course I couldn't help but think the worst but may there have been a good outcome? A better match perhaps?

AnthonyNolan2 karma

Answer from Ann:

First of all, it’s great to hear that you’re on the register and willing to help if anyone needs you. When someone is looking for a donor, we normally test a number of people to find the best possible match so it definitely might have been the case that a closer match was found.

Sadly, there are cases where people who need a transplant are not well enough to receive it or pass away before it is possible.

Unfortunately, this is the heart-breaking reality of what can happen when someone needs a transplant. But, even if this happened to be the case and of course we’ll never know, please don’t ever underestimate the hope and comfort that you being there would have given this person and their family. - Ann

BendyMouse1 karma

I'm surprised there has never been a donor younger than 17 in the UK.

A family friend of mine received a donation from her pre-schooler brother about a decade ago (She's all better now!). This was in the USA.

Is it bad to use little kids, or is it a consent issue or they do, just in family cases only?

AnthonyNolan2 karma

Answer from Ann:

Good point! Those under 16 can donate, but only for a brother or sister. Ethan is currently the world’s youngest unrelated bone marrow donor. Volunteer donors put themselves onto a worldwide register (like the Anthony Nolan register in the UK or Be the Match in the US) and then they donate if they ever come up as a match for someone who needs one.

When someone is looking for a matching donor, the first thing their medical team will do is check their immediate family. There’s a 25% chance that a sibling will be a match. But that means that more often than not, if someone needs a donor they are reliant on the kindness of a stranger (like Sean and Ethan). - Ann

blue_coral_green1 karma

Apologies if someone has already asked this and I didn't see this, but does it hurt to donate? In movies they always make a huge display of agony as the giant needle stabs them. I wouldn't mind donating because I'm fairly healthy, but that image puts me off....

AnthonyNolan1 karma

Answer from Sean:

Id just say that my experience of donating was very straight forward, pain free and treated as an out patient. Before my donation I was worried cos I heard all the rumours other people had said about it, saying it would be painful etc but it was the complete opposite, very similar to donating blood. Afterwards I thought to myself "is that it?". - Sean

Quitegiddy1 karma

Amazing guys, donating is such an inspirational and selfless thing to do :)

Quick question I'm curious about: Was it a long time between finding out you were a match and then donating? Also did you miss much work/school before and after??

AnthonyNolan1 karma

Answer from Sean:

I first found out I was a possible match in September 2011, then was confirmed as the preferred match late December 2011, then actually donated on the 1st February 2012, so it was quite spread out but ultimately all depends on the patient in need of a transplant and when the doctors give the good ahead for Anthony Nolan to inform the donor so I believe it will be different for every donor.

The only time I missed off work was the day for traveling down to London, the day of donation, then the day traveling back up to Cumbria, and then it was the weekend so I was back in work the following Monday feeling absolutely fine! - Sean

AnthonyNolan1 karma

Answer from Ethan:

There was about 6 weeks from when I first found I was a match, to when I actually donated. I missed about a week of college because I had to stay in hospital for two nights, then the two days of travel to and from the hospital. - Ethan

mscrowtray1 karma

Ethan, did your parents have any concerns or input, particularly as you were the first donor of your age? How did you deal with that?

AnthonyNolan3 karma

Answer from Ethan:

I actually signed up on my own accord, I didn't consult them until after I had signed up. They were obviously worried about the health risks because it was a fairly large procedure.

But Anthony Nolan got them to talk to doctors, which cleared up any concern that they had. They were very supportive, which was great and were 100% behind me with the donation. - Ethan

SilentlyCrying1 karma

I’ve been on the list to donate for almost ten years, what was the process like? What are the odds of ever being called to donate? Do you always get the chance to meet the recipient?

AnthonyNolan1 karma

Answer from Ann:

The odds of donating are really hard to quantify. On the Anthony Nolan register, about 1 in every 1200 donors will donate in any given year. But the odds really change depending on your age and gender. Men under the age of thirty are more likely than any one else to go on to donate.

The opportunity to meet the recipient is not a given. Donation is done completely anonymously in order to protect the donor and the recipient. After donation, they can usually exchange an anonymous communication through the hospital and the donor register (this does depend on where there are - different countries have different rules). In the UK, after two years, if both parties are willing, we can put people in direct contact with each other.

This is what happened with Sean and Johnny and was the beginning of a beautiful friendship! But not every donor or recipient wants to have contact and there's no pressure either way. - Ann

AnthonyNolan1 karma

Answer from Sean:

Other than what I've already said Id just say it's very simple to do and made easier from the help of Anthony Nolan who organise everything from train tickets and hotels and make it completely stress free and are always on hand if you have any questions before, during and after the donation. - Sean

The_Commissioner1 karma

As a university Councillor for Anthony Nolan i'd like to know what more Anthony Nolan think they could do to spread awareness to university campuses?

AnthonyNolan1 karma

Answer from Sean:

I attended the Marrow AGM in Leeds back in October along with Johnny, my recipient. We both shared our experiences which were both obviously very different pre donation/transplant, then talked about how we anonymously wrote to each other post transplant.

It was great to share our story and to tell all the students of the day we first met and how we went on to run the London Marathon together.

The reception we got was unbelievable and I think it was a great reminder of the amazing work that all the students do for Anthony Nolan and the great things that can happen because of it.

I would love to be able to do more talks alongside Johnny in order to help promote Anthony Nolan and the amazing work they do. - Sean

AnthonyNolan1 karma

Answer from Ann:

First of all, thank you for volunteering in your university. I'm guessing that you're part of our Marrow network of student groups?

Universities are a wonderful place to inform people about stem cell donation and to give them an opportunity to join the register. We now have 45 groups all over the UK and we hope to see that number grow over the coming years.

In universities, we've recently had a really great campaign called 'Tackling Inequalities', highlighting the need for more people from ethnic minorities to join the register.

On a single day campaign of donor recruitment in February this year, 71% of the people who joined were from ethnic minorities. At the moment, we're working on a Varsity campaign to encourage people to save lives through sport.

And we're always looking for new ways to raise awareness in universities, so please feel free to share your ideas! - Ann

The_Commissioner1 karma

I am yeah.

I've found that so many people are still surprised when most doners now do not have to go through the marrow extraction in the hip.

mscrowtray2 karma

What do you think about more AMAs? Do you think this would be an effective way of educating the University demographic to Anthony Nolan and other BM Registries?

AnthonyNolan1 karma

Answer from Ann:

This is our first time doing an AMA, so let's hope so! I think we definitely look at other ways to reach university age people - not just face to face.

And the more people like Sean and Ethan talk about their experience, the more people will realise that donation is a simple, but amazing, thing to do. - Ann

AnthonyNolan1 karma

Answer from Ann:

We often find the same and we try to talk about 'stem cells' as much as possible rather than 'bone marrow'.

Just 10% of people donate bone marrow now. But that's one of the many reasons why Marrow is so great. You're out there busting myths all the time - and signing people up and fundraising while you're doing it! - Ann