Living with MPN: Thanks to everyone who... - MPN Voice

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Living with MPN

EleanorPV profile image
11 Replies

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.

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EleanorPV profile image
EleanorPV
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11 Replies
Inca profile image
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 profile image
EleanorPV in reply to Inca

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

Inca profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
MazcdPartnerMPNVoice

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 profile image
EleanorPV in reply to Mazcd

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

Ebot profile image
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 profile image
EleanorPV in reply to Ebot

Lovely meeting you too.

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