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MPDlife newsletter - March edition

The March edition of MPDlife - the newsletter for people with MPDs is now available.

Articles include:

NICE recommendations for Ruxolitinib – latest news on the preliminary decision taken by NICE (the National Institute for Health and Clinical Excellence) not to recommend the use of Ruxolitinib for treating disease related splenomegaly or symptoms in adults with MF

Update on UKOSS (the UK Obstetric Surveillance System) research into MPD and pregnancy outcomes – Dr Sue Robinson, Haematologist at Guy’s & St Thomas’ Hospital explains the background and progress of the study which was launched in 2005 to survey a range of rare conditions in pregnancy

Patient story – Jennie Barnes has ET and was told last year that it had transformed into leukaemia, Jennie has shared extracts from her honest and moving blog she wrote following the news

Benefits and financial help for people living with MPDs – working age and pension age benefits, a brief guide to benefits/financial help that may be available to people living with MPDs

Epidemiology study – the study has now moved onto the next phase with recruitment into the pilot study starting March 2013

Fundraising events update

You can download your copy at:

5 Replies

After reading Jennie's case, the question that I would like answered, was how could the reading of her BMB alter from 7% blast cells which indicated that her ET had transformed into Leukaemia and then prior to commencement of her chemo treatment following a further BMB her blast cells had reverted to 2% which is normal? A Miracle or a Mistake!!

I am delighted that it turned out so well for Jennie.


I am delighted it turned out so well for Jennie too. I wonder if the hormone therapy in preparation for IVF could have had any effect?


Hi -I clicked on the above 'financial help' which took me to a work at home page. Has any-one tried this? Is it genuine? You have to give a credit card number and pay USD 19.99 you then have 3 days to make your mind up but if you don't cancel will pay USD 99.62 and a monthly fee of USD 49.37. I think so many of us with MPD's are struggling financially and would look at something like this hopefully as you can work when you feel well enough and for hours that would suit your illness??!!!! Great news for you Jennie!!


Hi Eire, can you please tell me what link you used that took you through to what is obviously a scam, the link I have put above should take you through to the PDF of the newsletter, I have just tried it again, twice, and it definitely takes me to the newsletter. Thanks. Maz.


Looked into this and it is a scam -beware!!!


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