September 8, 2016

Margot’s Dr explains why we need unrelated donors & the huge difference they have made

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imageEarlier tonight, Margot’s auntie Nadia & I were invited to attend an event at The Royal Society hosted by NHS Blood and Transplant.

The occasion was celebrating 30 years of the British Bone Marrow Registry (BBMR) as well as 20 years of cord banking, and the subsequent achievements: the lives saved as a result.

Two fathers, John Humphries and Malcolm Thomas founded what’s now the BBMR in 1987. Today, there are more than 350,000 potential bone marrow donors on the BBMR and 3,050 actual donations have been made since it started.

The cord blood bank began in December 1995 and now has over 14,500 high dose cord blood units, which importantly enable what was described as “equity of access”: permitting a greater tolerance of the mis-match between donor and patient, particularly when an unrelated donor match cannot be found. 600 cord blood donations have been given since inception.

Plaudits were paid to the Welsh Bone Marrow Donor Register and also Anthony Nolan, who have been more closely aligned with the BBMR since 2012 and it was lovely to hear ACLT charity and also Team Margot receive a mention too – well done everyone for helping to make a difference. Your efforts are not going unnoticed !

One of Margot’s consultants, Professor Paul Veys, a world renowned leader in the field gave an interesting talk, highlighting the improvements in bone marrow transplants over the last few decades. In particular he highlighted the forward strides since the first unrelated donor transplant occurred at GOSH.

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Whilst it’s not the best image, the light blue bars illustrate the patients who are alive (year on year) versus the dark purple bars which show deaths. The big positive changes occurred from 1994 (indicated by the red pointer), which was when unrelated donor transplants (as opposed to haplo-identical transplants which use a sibling or a parent) started to become more prevalent

We then heard from a recipient of bone marrow, Nigel Griffiths who spoke briefly to make the simple point that “for us [patients], a donation just means life; we are able to live longer as a result and I am able to attend my daughters’ wedding.”

Nadia and I were pleased to meet Tony & his wife Vicky (centre right) afterwards and also Karl's parents, Julie & Steve (centre left)

Nadia and I were pleased to meet Tony & his wife Vicky (centre right) afterwards and also Carl’s parents, Julie & Steve (centre left)

Lastly, we heard from Tony Blood, a bone marrow donor, whose perfectly matching bone marrow was transplanted to a young boy, Carl Hillis in 2008. Some years later, Tony heard from Carl and his parents and they eventually met in December 2013 (co-incidentally on my birthday!).

It’s wonderful to hear good stories and outcomes like this and it really drives home how patients only need one donor & how each of us, in our own unique way, could be that donor.

Team Margot
Together, saving lives

 

Husband to Vicki and father to Oscar (2007), Rufus (2008), Digby (2015) & Margot (2012-2014)

Posted in: Journal