I just felt like telling all of you how much it means to have a place where I can reach people who actually not only knows what et and MPN is but also what it feels like to live with.
I hope you have a really good 2020 and that we can continue to help and support each other.💕
Written by
Bohus
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This is a very special forum with very special people who gain knowledge , support, friendship, and encouragement from one another, and of course our wonderful team who administer the site, particularly our Maz who keeps a gentle.... but eagle eye on us to make sure that there is nothing offensive or upsetting posted, she will step in with advice and kind words as and when needed. Thus making it a kind and safe place for us all.
Lots of love to you and I couldn't agree more. I was given a verbal lashing by my haema before Christmas for having the audacity to request a visit to an MPN specialist. I mean a really bullying rant. I wasn't able to actually tell him that it's necessary because he never discloses anything and when I ask something, he wants to know why it's important for me to know. Bare minimal blood tests are done and he seems to have no information that helps.
Therefore, this is the site I need to go to for communication with those who actually know about this condition and who want to share experiences.
I am with you and all of those who appreciate the sharing nature of this community. I only wish we could meet occasionally with those in our own areas. That would be the icing on the cake!
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