MPDlife - the newsletter for people with MPNs

November 2014 issue now available, the newsletter is packed full of interesting articles:

•Rapid changes in MPN research and treatment options – Professor Claire Harrison reports on the European School of Haematology MPN meeting held in Estoril, Portugal in October 2014, and tells us about the new scientific developments

•An update on the MAJIC study which is testing Ruxolitinib

•Bone marrow transplant – two patient experiences – Emily and Sally share their stories with us on having bone marrow transplants, followed by an article on what exactly a bone marrow transplant is and what treatment and outcomes it entails for the patient

•The MPN Fatigue Project – Professor Ruben Mesa, Mayo Clinic Arizona, updates us on the findings of the second phase of the fatigue project which invited people from around the world to complete a survey answering questions on the impact fatigue has on their daily life, overall 1,788 MPN patients participated in the survey

•Trials – details of the latest trials available for MPN patients

•Fundraising update from Marilyn, our fundraising co-ordinator and the plans MPN Voice has for fundraising events in 2015

Read and download the newsletter here...

If you would prefer to have a printed copy of the newsletter please email with your full postal address and I will send a copy or copies to you, maybe you would like some to put in your haematology department (if you are allowed), just let me know how many copies you would like.

8 Replies

  • Hi Maz I will look forward to receiving my Copy , And I think your idea of putting a few in our Haematology department is fabrastic, could a have a coupe extra , much apriciated

    Pam x

  • Ooops I meant Fantastic:) x

  • Hi Pam, I like fabrastic, I will get them posted off to you, I'm afraid it won't be until next week though, had a slight delay in getting them from the printers, should be with me over the weekend. Maz x x

  • Hahahah yes Maz our Word of the Day. Fabrastic lol

  • Hello Maz

    Your idea of leaving copies around in relevant places is a good one. Could you maybe send me two or three. One is destined for my GP's waiting room!

    Thanks for all you do with such good grace Maz. It would be easy for us to forget that you are also an MPN sufferer and "one of us" as well as being there for us in so many ways, providing info through your line to Dr Harrison. Dr Harrison too deserves praise for setting aside some time for our individual questions to you, into her busy schedule. All these things together with our excellent rapport between members makes an invaluable self-help and support tool for us. Merry Christmas to all of us!

  • Hello CrazyDaisy, yes of course I will send you some, can you private message me or email me your address, I don't think I've got it, I only have the medical centre address you sent me last time, thanks. And thank you also for such lovely comments, it's a pleasure for me to help people and to know that there is such a lot of support coming back from you all, there are days, like all of you, when I get a bit fed up with my ET and the symptoms, but as you say, this group is invaluable to us all and it definitely helps me in so many ways to cope, so thank you to all of you. I will also pass on your lovely comments to Prof Harrison, she will very much appreciate them. Merry Christmas to you and everyone else. x x x x Oh and it's snowing, so my day is happy already, I love snow, so does our dog, so snow boots at the ready and hot chocolate, of course!!!

  • I will email you Maz. We have only a flurry here which has already melted. Enjoy it and easy on the hot chocolate, full of iron but as they say a little bit of what you fancy does you good!

  • Hi CrazyDaisy, I've got the newsletters now, can you send me your address. Thanks. Am taking it easy with the hot choc, just wish I could leave the biscuits alone now! Maz

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