Welcome to the MPD Voice community. Who are we and what do we do?

The point of this community is to provide a space where you can share your experience, support one another, and become better informed about MPDs (myeloproliferative disorders) which include polycythaemia vera (PV), myelofibrosis (MF) and essential thrombocythaemia (ET). MPDs are rare blood cancers that affect people of all ages, people who have an MPD can experience chronic illness, difficult treatments, severe fatigue and pain and social isolation.

Our work at MPD Voice is to provide help, support and advice through forums which we hold around the country, pairing people up with a buddy, and funding research to help us better understand MPDs and to hopefully one day, find a cure.

We are very excited about this new online community, help us to make it work, join us and start telling us about you and your MPD, feel free to start commenting and asking questions, we'll do our best to respond as quickly as possible.

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  • My husband was diagnosed in march this year with ET aged 39 after developing a splenic clot. Has been on warfarin since and just been started on hydroxyurea. He feels well which is the main thing. Still getting used to all this and trying to get head round it all

  • I've just joined but I don't have a MPD but my husband does. He takes hydroxyurea daily and has done since diagnosis 5 years ago. Apart from taking his pills and turning up for his hospital appointments he likes to 'pretend' he doesn't have it! However, I want to know as much about MPD as possible and what to 'look out for' and know how best to support him. I'd be particularly interested in 'meeting' here other people in a similar situation.

  • Hi having noticed the two comments above both from spouses with an MPD I would like to offer a note of optimism. I was diagnosed with ET at the age of 38 whilst pregnant with my son. It was picked up in one of the many routine blood tests that are taken during pregnancy - that was over 16 years ago in 1996. For a good many years I simply took a daily dose of aspirin and was monitored by regular blood-tests and for the past few years (lost count - but certainly over 5 years) have been taking hydroxyurea (9 tablets per week). This has kept my count down to the mid 400's - I feel no ill effects and lead a perfectly normal life. I recognise that I am one of the lucky one's and that other people's experiences may not have been as fortunate. However, I am confident that research is moving on very rapidly particularly with the JAK2 inhibitor research and that with continued monitoring there is absolutely no reason not to believe that I will go on to live to a ripe old age. I am just thankful that it was discovered before it had produced any unpleasant symptoms.

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