Emma Paine

Emma Paine is an MDS patient and an active member or our MDS Patient Support group. She had a first stem cell transplant in 2011 and recovered well, but her MDS came back in 2015 and she needed a second transplant.
Funding for second transplants has been revised in the UK due to “cost-effectiveness” issues and hospitals all over the UK need to seek special funding requests for those patients (IFR=Individual Funding Requests)
Emma battled to be granted a further chance to live and she managed to have a second transplant in January 2016. She says in her blog Emma’s Fight against MDS

Whilst waiting for approval from the IFR I got sicker and sicker, I spent roughly 3 months in hospital on continuous IV antibiotics as my immune system weakened and the AML progressed. In the end my consultants made the decision that we needed to go ahead with chemotherapy regardless of the decision on the second transplant funding. This was a risky choice, as although the chemo would kill the cancer cells, it might also kill too much of my normal bone marrow for me to stand a chance of recovery. However, if we left the AML to progress further then the transplant might not stand a chance of working full stop.

I was lucky and I got given a second chance. I was deemed to “demonstrate exceptionality” and to be a “cohort that would benefit due to long term survival”. BUT I knew of others that weren’t as lucky as I and weren’t deemed exceptional. What gave me the right to live but not them?’ (here I did give more information on their story, but I won’t do so in my blog without their permission!)