ET ISN'T ENOUGH FOR ME!! Now it's haemophilia/ von Willibrand

This is a new shift in my lesson on the mutant that I am!! Now I have morphed again, this time it's to the haemophilia clinic(what next), to find out what is involved in my new chapter. It seems similar to PV???

Having ET + com Willibrand has anyone had similar result/ treatment with this Morph!!

RubyRuby is this similar to your experience ? Anyone else??

5 Replies

  • Oh dear, I think you are just being greedy with diseases! Actually I really feel for you, you must have had a real shock with this on top of the ET. I don't know anything about haemophilia but I do wish you all the best and hope you can get suitable treatment.

    Bet wishes


  • Hi. My morph to PV was evident in my red blood cell counts increasing so not related to excess bleeding like von Willibrand syndrome.

    I had a mass cell count which gave my haematologist the info she needed to change my diagnosis from ET to PV. Maybe this is something you could ask for ?

    Good luck

  • Thank you Ruby😘 who knows what is going on in here, totally confused. I do hope your doing well.

  • Hi Craig, I'm just wondering how you got in with this? I might have a similar issue. Thanks


  • Hi Craig, I am ET with (query) von Willebrand. I don't have big problems with bleeding (soft tissues like gums mostly and bruising) and don't have any treatment on top of hydroxy for the ET (which is still not managed well - up and down results, which is why I haven't focused on the vW at all as it seems secondary and, to be honest, I don't know much about it at all!). Are you being treated for it? Sue

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