Q&A about bone-marrow donation and cord-blood donation with the communications team from Anthony Nolan - ANSWERS BACK

[RachelMumsnet]

Given the number of questions raised on this thread, we've been in touch with the communications team at Anthony Nolan and we're delighted that they have agreed to join us this week and answer your questions.

Anthony Nolan is a charity that helps save the life of people with blood cancer by using their register to match them with volunteers willing to donate their blood stem cells. There are currently 430,000 people on the Anthony Nolan register, but they are only able to find a match for around half the people who are in need of a lifesaving transplant. In order to double the number of lives they help save, they want to grow their register to one million potential donors. They are particularly keen to recruit young men aged 18-30, as they are the most likely to be chosen as donors.

Anthony Nolan also runs a cord blood donation programme at four hospitals around the UK. A cord blood unit is an alternative to finding an adult donor, and has many advantages, such as being immediately available for transplant, which has better outcome for patients. It also helps to address the lack of adult donors from ethnic minority backgrounds, who are traditionally underrepresented on the register. Under the scheme, mothers can donate their umbilical cord and placenta (usually thrown away as clinical waste), which are tissue typed and stored until needed. Donating does not interfere with the baby's birth once the baby has been safely delivered, a dedicated cord collector will make the collection, leaving the midwife free to focus on mother and child. For more info, please visit www.anthonynolan.org/cordblood. It is estimated that if they can collect 50,000 cord blood units (between Anthony Nolan and the NHS), they will be able to meet 80% of transplant requests.

Send in your questions about stem cell (or bone marrow) transplants, the work of Anthony Nolan and their cord blood donation programme and we'll be sending over a selection of your questions to a panel at Anthony Nolan: Ellen Marshall (Communications Officer), Guy Parkes (Head of special Projects) and Amanda Blum, (Donor Support Supervisor). As we're keen to get the answers back and live on the site asap, we're not setting a close date for the Q&A but will post on this thread once we have enough questions to send over and will keep you posted on when to expect the answers back.

To sign up to the register, you simply need to visit www.anthonynolan.org/spit, fill in a short application form and provide a small saliva sample. As it costs £100 to recruit each new donor to the register, the charity needs vital funds as well. More info can be found at www.anthonynolan.org

I have a question! :)
I am 30 years old british citizen and I have been living as a temporary resident in Australia for the past 2 years and have another 2 years on my visa but i do plan to become a permanent resident of Australia,
I looked into giving blood here and they wont accept my blood as I lived in the UK during the mad cow disease, so if Australia doesnt want my blood or bone marrow and I donate it to the UK from Australia anyway? or is there any way I can help? I am actually pregnant at the minute so couldnt donate yet but i will enquire about the cord blood but i presume it will be the same situation!
thanks :)

I'm another British citizen living abroad.

I registered years ago, and then left the UK in 2000. Before I left, I contacted you to update my contact details to my college alumni associatioin, but you said if I left the UK I had to be removed from the register.

Given that finding a match is such a lottery, has this policy been revised? There is no time in the past decade that my college couldn't have reached me by phone, email or post. It has niggled me over the years that maybe there had been someone I could have helped. If I were ever to return to the UK, would my registration be re-activated?

I am so glad to see you promoting the benefits of bone marrow/stem cell donations.

I have just received some stem cells, organised through Anthony Nolan, and the process was very straight forward for the donor, albeit it did mean a few trips to London.

So many people I know who donate blood are not even aware that they could also register to donate platelets, plasma, cells etc.

Blood donations and stem cell donation have saved my life, for which I will be grateful for for the rest of my life.

Can you join the register if you have previously received a blood transfusion (not for a medical condition but for a post-partum bleed)? I know this stops be donating any more blood but will it also prevent me donating bone marrow?

Yet another version of this question: why is donation limited to just 2 hospitals nationwide, and when will it be possible to donate regardless of where you give birth? If cord blood is so good, why is collecting it so restricted? I bet it's a cost issue ...

I had hepatitis, years ago. I've had numerous pcr tests since treatment (which was successful, back in 1998) and they have all been negative for viral dna - it seems such a shame not to be able to donate marrow, or even blood

If there is any risk, I understand. But I don't understand what the risk would be, tbh, with the accuracty of PCR testing these days...??

I take a fairly high dose of thyroxine (225mcg) a day and am permanently anaemic - take iron tablets and calcium for osteopenia due to being Coeliac - can I still donate? I would like to but haven't been able to donate blood for ages due to my iron count.

Thanks

I have suffered sciatica but desperately wish to donate and help out. Can you explain why I can't?

I have tried to register, but was told that I can't donate as I have coeliac disease. I understand that it would be annoying to develop CD after bone marrow transplant (which would be vvvv unlikely and it isn't know if it could happen), but surely better to give someone a chance of living with a dietary restriction than not at all.

We arranged to donate DD's cord blood (were lucky enough to be at one of the few hospitals where possible!). I felt very strongly about wanting to do this! I was told it was all set up and my file was flagged, etc...At the last minute, when labour was not progressing, I was prepped for a ceasarean., then DD was delivered by forceps. I assume that the cord blood donation was carried through with by hospital staff, but have no way of knowing. Am bothered by the thought that with all the change in staff and birthing plan, that maybe it did not happen and that I did not - in moment of holding new baby and being quite exhausted! - remind anyone.

So I guess my question is -is there any way of knowing if a cord-blood donation was received?

...and if in our case or that of skinnyjeans above - the donation was not done - i would want to know why not and how often this happens. It seems like a waste if people are willing and then "on the day" it is falling through the cracks!

Another former sciatica sufferer here who wants to donate. My sciatica was a result of severe SPD during my pregnancy 5 years ago.

Why is this stopping me from donating?

I wanted to donate but all of the hospitals are miles away. There should be facilities for transporting donations in every hospital IMO. Every mother I know would also have donated had they been given the option.

Brilliant idea for a discussion MNTowers. :)

Why can't the 40yo age limit be increased?

I'm so very sorry MrsDeVere about your DD. I hope everyone will take a look at her beautiful girl if they're needing some incentive to go and get on the register. Nobody should be lost, especially a child, just because the one person walking around with their cure wasn't on a list.

My own DD is five and has just finished chemotherapy treatment for leukaemia. If she relapses, she may well need a transplant, and I have known a few gorgeous, wonderful children who have been through it already.

Please, everyone, if you can get on the register - do.

I'll be interested to hear the responses to the sciatica and hypothyroidism questions that have already been asked, as I've been on the NHS register for many years but have since developed these issues.

Oh CMOT I didn't realise that re: not being able to donate due to being Coeliac. I agree, it's hardly flipping serious in the grand scheme of things being Coeliac - but maybe as it's an autoimmune disorder it could compromise someone's immune system in other ways?

We're closing the Q&A now as there are already so many questions raised here. We'll be sending the questions over to Antony Nolan team and should have the answers up by early next week latest.

Bet they are regretting asking for questions now?!

It would be worth explaining how donors are matched, and why children and parents are not suitable. This was the biggest hurdle I found hard to explain because people couldnt understand the process. A lot of internet explanations are too complicated

I agree with Iamseeing. I think people can be complacent because they think it happens to their children they will donate. They therefore dont go on the register.

May I ask one last but very important (to me) question?

Next year would have been my DD's 21st birthday. On her 18th I made an attempt to organise a drive to recruit new donors in honour of her birthday. I wanted to encourage young and particularly mixed race donors (lots of her friends are from very mixed backgrounds) as well as white and older donors of course.

I tried to get some help from AN and ACLT. Despite emailing and calling I recieved NO response whatsoever. It was very disheartening as I was simply unable to cope with organising entirely on my own. It was a very difficult time for me and put me off trying again.

I know you cant tell me why you didnt respond then but perhaps you could tell me what sort of support you can offer someone like me who is willing to use her DD's memory and story to reach your core target i.e. young people?

my question was also going to be about the age limit, i'm 41 therefore considered too old to donate or even be tested

daenery no, if you can give blood you can ask at the donor session to be registered with them- they take up to age 49. HTH

I am giving blood on 31st January so will be registering with them then, I presume that when looking for a match all avenues are explored? I'm sure this has been covered elsewhere, so apologies.

The answers are now back and you can view the full Q&A here:

Anthony Nolan Q&A