I can't believe it I really just can't believe it!!!

I've had polycythaemia for several years now and today my mum got a phone call from the GP saying she has PRV !!!!!! Thats supposed to be impossible odds!! What the heck - she's a mess now because she knows what I go through. I dunno what to say or do except b angry or upset no scared umm I don't know.

What other forms of blood mutations related to pv are know in the uk?

12 Replies

  • I know about JAK2+\- & EXON12 & 13 parts of the JAK2

  • So sorry infuseme, your mum must be feeling quite overwhelmed right now, as must you. Is she not Jak 2 pos? The only other mutation I have heard of is CALR but I believe the study on this is to do with ET and MF. However I am new to all this and no expert. I wish u both well. X

  • Oh, what a shock. Direct her to this site because she will realise how different all of us are with some people not having much reaction to PRV at all. I don't think my condition so far is too bad for instance except for the tiredness which is infuriating as that has changed how I live my life. There is so much more to learn about these blood conditions it really should be given much more priority in the world health system don't you think. I am staggered how little information is available and how few people one can ask questions of. Best wishes to your mum.

  • Sorry to hear your news. How rare must that be? Wishing you both the best...

  • It is unknown as to what causes MPN's however there is a belief that it could be caused by environmental factors. Therefore, it's not necessarily a surprise if family members have this illness if they live in the same place! It's one if the unproven theories. But makes sense to me.

  • So sorry for you both. Hoping for comfort and ease for your family.

  • My mother had PRV for very many years and lived life absolutely to the full. I have ET and was told when first diagnosed by haematologist very rare to have mother and daughter with MPNs, but discovering it is not so unusual as first thought. Best wishes to you both. Tinkerbell

  • Sorry about your Mum. I live in Australia and my sister-in-law in UK also has PRV. No blood connection there and no common environmental factors either. Just a case of coincidence. Good luck to you both

  • Thank you all for the support.

    We've started to read up on Familial genetics. . My wife and mum seems to be able to get her head round it better than me lol.. ive been a bit foggy in the head this week lol..

  • so sorry to hear your news. definitely send her to this forum, between your knowledge and support from this forum, that will help. thinking of you both, aime xx

  • She was diagnosed the JAK2's EXON12 positive for the mutation.

    Wich strongly suggests its familial. (Oh Crap)

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