World MDS Day

It seems to take me ages these days to sit down and think about writing me blog….. I can only think that is a good thing as it usually means there is nothing nasty going on in my health life, and everything else just feels a bit ordinary!!

Tuesday 25th October was World MDS Day. We had planned a flash mob in London, and in a few other locations in Europe to help raise awareness. We were meeting at 11 to rehearse and then deliver at 1…….

Now stupid me totally missed the memo containing the choreography, until 11:30pm the night before!! So ended up attempting to cram it all into my head whilst on a jam packed train to london. Worse…. I dragged my mum along and didn’t tell her we could have learnt days before!

Despite my last minute attempt to learn I still opted to stand near the front of the group, made quite a few mistakes, but who cares!! We did what we wanted to do and had a really good time. It was great to meet fellow supporters and just a fun day out!

Please watch and share the video


Health wise – The antibiotics seem to of done the job and I appear to be sinusitis free!!! Woop!! Bloods are still doing well…. Keep your fingers crossed as things are looking good!!

Busy week up ahead with talks for Anthony Nolan and a meeting at the house of parliament about second transplants!! What to wear?!?!?!




2 thoughts on “World MDS Day

  1. Sandy Fitterer

    Dear Emma,

    My name is Sandy Fitterer and I live in Ithaca, NY USA. I was diagnosed with MDS in 2013, and was ‘wait and watch’ until this year. I discovered your blog somehow shortly after you began writing. I followed. Things got serious for me in June this year. In September I went backwards and binge read your blog You have been so, so helpful to me!! And I just wanted to thank you for your writings! My transplant is on November 15. (I go up to Buffalo, NY on the 8th.) I have used your Hospital Essentials to help pack my bags. I am nervous, anxious for what is to come, but having read what you’ve been through….makes it a little less scary. So glad you are doing well! I continue to send strong thoughts your way.

    Sincerely, Sandy



    1. Hi Sandy,
      I am so pleased you found my blog and it has been helpful. Please let me know if you have any further questions I might be able to help with.
      I wish you the best of luck with your transplant and the future!! Please do keep me updated on your progress!


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