Hi everyone, REALLY IMPORTANT Please email me your experiences of living with PV......

[LouisePRV]

I'm to be interviewed by a medical journalist on Saturday, and the resulting video will be shown to haematologists all round the world.

Obviously I'll be telling him about my experiences, how PV has affected my life ( and my family's) the nagging symptoms, etc etc

If you can email your experiences and feelings then I'll get them together , print them and hand them to him. So, now's your chance to voice your fears, feelings, experiences and anything else.

If you email pronto I'll send the list of questions that I'm to be asked and you can answer and email back...

Please contact me ASAP

[e-mail]

Remember the more info we can give the people who look after us, the more they can help.

Thanks

Louise

[fannetastic]

Emailed you Louise. x

[LouisePRV Volunteer in reply to fannetastic]

Hi could you please resend - didn't get it... Thanks

[Twinkly]

I've written back to Louise ,as she is my buddy.the more we can support these ventures the more information collected ,the sooner hopefully finance will come to help make trials available to all parts of the country ,,lets work together on this,,,twinkly. Xx

[Nirbhebe]

Best of luck to you and thanks for telling your story. I have ET so I'll refrain. MPN's are so difficult to understand and testimonials are so approachable. I think this is a very important act. Every time I risk and share a small part of my daily life experience I believe it helps all concerned. So great that you have an opportunity to do so on a larger scale. Blessings

[karteeka]

hi louise the video sounds fantastic- especially as our experiences are so different- and i live in australia , so even the medical system is different- id love to participate by answering your questions my email is [e-mail]- cheers karteeka

[Twinkly in reply to karteeka]

Hello karteeka ,Louise is a buddy ,so we can support each other at times of stress through our problems.dont you have any back up in your country?,I live close to an amazing teaching hospital at Cambridge ,just lucky now I need the help.do you get offered trial drugs? It seems we are limited as to where we live ,is it the same for you? I'm just a nosey granny ...