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 donated previously. How many times can one donate and is there a period when you are off-list afterwards (when you can't donate)?

Also, when I donate for example with Anthony Nolan, does that info go to the NHS register (I'm not sure how they communicate with each other)?

Is it just in London that the donations can be done?

Is there going to be a way mothers can donate the umbilical cord and placenta nationwide? I wanted to donate this when number 3 comes in June but I'm no where near any of the hospitals listed.

What is the reason for not being able to donate if you have a latex allergy?

Is it possible to donate during a different medical procedure (eg. hip replacement, with the donation taken from the bit of joint removed)?

May I ask why the cut off weight is 8st. I'm normally 7st 8lb (when not pregnant) and healthy but am not able to donate. I couldn't get to 8st if I tried.

I had liver inflammation in 2004 after the birth of my son which was recorded as viral hepatitis. (G I think?). This was when living abroad in a Spanish country.

According to your criteria this may make me unable to donate? Could you clarify. I have no access to my medical records for the time I lived abroad.

I was going to ask similar to Kazyr, also due in June and not near those hospitals. Also, is there any way to donate placenta/cord to researchers at local universities if it can't be donated for actual use for donor cells? I know there are people at my local uni who do use placentas in their research (malaria esp), but am not sure about contacting them directly, or should it be through an organisation?

Also, if someone has previously worked with infectious diseases that require them to undergo regular blood screens (e.g. mycobacteria or Trypanosoma cruzi), can they donate stem cells? I know it was recommended to me not to donate blood just in case, as T. cruzi is not screened for by the blood service in the UK.

Can I ask another. I put an appeal for registration on my Facebook and got a lot of cross messages from gay male friends. Most of them are in long term relationships and none of them are promiscuous (some of my female single friends are a different story ). Yet Anthony Nolan will not apparently let them register! Can you explain the thinking behind this please?

Would also love to donate cord blood but am outside of london in herts, and labour too fast generally to get to one of the hospitals in time.

Can cord blood be collected if a mother has had a natural 3rd stage and waited for the cord to stop pulsating before allowing it to be cut?

I'm all for donation, but some of the blood in the cord rightly belongs in the baby and depriving them of the last bits by cutting it immediately actually reduces the baby's iron status at 6-9 months and reduces their overall blood volume after birth.

I take thyroxine, but at a really low dose of 25mcg. Can I donate?

Can I ask people to look at my profile for a few seconds.
That little girl there, she would be twenty if 11 days time.
We didnt get a match.
She died, aged 14. My girl.

Please, please, please do all you can to sign up and/or get your young relatives to do so. If you are mixed race it is SO important you do.

AntonyNolan WHEN will ALL pregnant women be able to donate cord cells?

Why is it taking so long to roll this out across the country?

Keep up the good work.

MrsDV _ that is tragic, such a beautiful little girl. I am really sorry for your loss.

I am on the register but would be interested in finding out about donating cord blood. Am due in April but my hospital not on the list. Seems such a waste to not have a nation wide system.

What does the Anthony Nolan Trust do to recruit students as potential donors? They would seem to be the ideal group to target as they have 40 years potentially on the register. DS1 is on the register - may have joined as part of a university campaign. DS2 is at university now and has just been diagnosed with CML, so I have a good reason to ask this question!

Hi, I was hoping you'd be able to tell me if I can donate ? I have type c antibodies in my blood ??

Lilymaid - I think their itinerant nature may be why. :)

Definitely itinerant - DS1 is currently working abroad, but always contactable via Facebook nowadays!

Is cord blood and placenta usable after a physiological third stage?

Does surgical donation produce better results/cost a lot less than non-surgical donation?

Can you explain a bit about what makes males under 30 prime candidates?

Why does having a history of sciatica prevent people from donating bone marrow? My daughter has leukaemia and I would like to be able to join the register so I can help other people in this horrible situation.

Why is there an arbitrary cut off age of 40?

Ok I'll ask the selfish question. I didn't donate cord blood because I wanted it kept for my child and when I asked if it could be divided into 50% donation and 50% if my child needed it I was told no. Could AN work with the private companies to benefit from those planning to keep most of the cord blood but happy to share some, that would widen the net too surely ?

my children have a similar ethnic profile to expat's can children be tested, or is it just siblings (or as DD1 says in reference to her brother, 'bibling' )