Living with MPN

[EleanorPV]

Thanks to everyone who congratulated me on my patient talk. I was overwhelmed with the response from the audience. This was the first public speaking I have done.

I was dx PV jak2+ July 16. I love all the research side of MPN’s. I’ve only gained this love, through my fight for a better quality of life.

[Inca]

Very well done! In a great hall like that too.....I'm P V 8yrs coming up,like every one I have had a difficult journey,like you I keep going,did two expos either side of the M P N day,but hardly dare ask questions in the P V group!!All overwhelming for for me....brave you ,congratulations.Sally

[EleanorPV in reply to Inca]

Thanks, Do you know you can send any questions directly to MPN voice?

[Inca in reply to EleanorPV]

Yes I Suppose so,but I live in S W France....I have excellent care from my G P there,consultant and my regular nurse.My husband did ask a question re the 45hct crucial limit. I have found differences in my treatment compared to U K, so it's a difficult one really.I add tho ,that I regard the M P N site as a great help,I discuss it with my G P ,consultant and nurse,who are

[Inca in reply to Inca]

Sorry lost the pad a moment....my care team are interested and I shall take the package we were given for them to see .Thanks any way and keep really well.I am now 77 ,I work as a Proffessional sculptor,keep horses and two German Shepherd dogs...so plenty of exercise and interests which I think is so important to help us get thru the bad times,have had many of those in 8 years! Best to you. Sally

[Susana7]

I meant to say hello Eleanor but did not have a chance - great talk! I also have PV, since 2014, and doing very well on Pegasys. Susana x

[Poppy6060 in reply to Susana7]

Hi Eleanor I really enjoyed your talk thank you it must have been a bit frighting but you did so well i have PV and it’s a journey we all share hope you keep well you are good swimming and walking I must do more have a good day Poppy 6060

[EleanorPV in reply to Susana7]

Yes there was a lot of us in the one room. Impossible to speak to everyone. Hopefully catch up at the next one 😜

[Mazcd Partner MPNVoice]

Hi Eleanor, your talk was amazing, as were your slides, you were absolutely brilliant, so thank you so much, I am glad now that I asked (or bullied!) you into doing it, I knew you would be just right. Maz x x x

[EleanorPV in reply to Mazcd]

You seem to know me better than I know myself. Thanks for the support and positive persuasion 😜

[Ebot]

Congrats again Eleanor. You gave a great presentation and no one would have guessed you are not a seasoned public speaker! So glad we got a chance to chat over tea and feedback form filling at the very end. Keep well. Keep swimming! Xxx

[EleanorPV in reply to Ebot]

Lovely meeting you too.