MPN Voice
2,934 members4,455 posts

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
oldestnewest

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

Lizzie

Reply

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

Reply

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

Reply

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

Tamzin

Reply

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

Reply

You may also like...