Is there anyone with PRV on HealthUnlocked living in Australia?

[sand-bog]

I came across this website after being diagnosed with PRV and talking to someone in the UK who also has PRV. It is obviously a website that originated in the UK and would be interested to know if anyone living in Australia finds this site useful and informative. I know I do!

[shellsween]

Hello Sand bog, My name is Michelle I am Australian and yes I do find helpful information on this site. I live on the Gold Coast and through facebook I also know of a few other Australians with ET and PV, though from what I gather there are not many of us?

[sand-bog in reply to shellsween]

HI shellsween, thanks for your reply. How long have you been diagnosed and what meds are you on? I didn't think there were many of us either but when I spoke to my Haemo he said he had about 50 patients he was treating with PRV. I live on the Mid North Coast of NSW and he is in Port Macquarie. Don't know of anyone else with it in Oz'

[shellsween in reply to sand-bog]

Wow that so surprises me, I did not realise that their were so many in NSW. I would think that would make your Haemo very well versed in this. I find that really interesting as I thought I would have to go to Melbourne to find someone who had real knowledge. I was only diagnosed earlier this year with ET and then more recently their is a good chance I have PV but I have head in the sand as I do not want to go on Hydrea. I am only on aspirin and natural products at present.

[sand-bog in reply to shellsween]

Hi sheellsween, fyi I am on Hydeoxyurea an don't seem to have any side effects apart from feeling very tired (maybe I'm just lazy and using that as an excuse!) No not on facebook

[shellsween in reply to sand-bog]

Would be nice if we were just lazy, I always have had get up and go, ants in my pants, unable to sit still. Well no longer and wish it were pure laziness. I have joined the MPD-oz site excellent thanks again karteeka.

[karteeka]

hi sabd bog.i am jo-ann and am an aussie living in perth and have pvr. i find the uk website interesting but in all honesty their health system is terrible compared to ours- ours isnt perfect but as i work in the system it is much better. there is an aussie website mpn-oz which is like this site- of mpn journeyers, and is easy to join. also for information the leukaemia foundation out of melbourne has through sam soggee who is its national mpn co- ordinator - she regularly arranges get togethers, information forums around the country.

[shellsween in reply to karteeka]

Thanks for that information Karteeka, are either of you on the facebook sites?

[shellsween in reply to karteeka]

I have joined the MPN-oz site excellent thanks again karteeka. I lived in Perth for a couple of years recently.

[sand-bog]

Hi Karteeka, Thanks for the info on the aussie website I will get on to that. Haven't got as far as thinking about the leukaemia foundation yet (and hopefully won't need to) but will keep that in mind.

[karteeka]

hi sandbog dont let the leukaemia foundation name scare you- they are a brilliant source of information on all mpns and offer lots of support on line , and are based from memory at the austin hospital in melbourne. im not on facebook but regularily get posts through the mpd-oz karteeka

[sand-bog in reply to karteeka]

OK thanks karteeka

[babbittybumble]

Hello ,There is a brilliant Doctor in Melbourne who is very much up on all the Myeloprolific disorders.I know he is now head of the Bone Marrow Transplant team in Melbourne. and Professor Claire Harrison from Guys Hospital in London has visited him. He is very well informed on these rare blood disorders .Hope this helps. Bye

[babbittybumble in reply to babbittybumble]

I think its the Royal Melbourne Hospital, not sure about the Austin Hospital.

[sand-bog in reply to babbittybumble]

hi babbittybumble, thanks for info, will get on to it. I find these different sites have a lot of interesting stuff even if I don't understand it all

[sand-bog]

karteeha and shellsween - have joined the MPN oz site, an excellent one -thanks

[socrates_8]

Hey Sandbog...

Interesting handle... :))

My name is Steve and I am 57 from Sydney. I was diagnosed in May with Post ET / Myelofibrosis, and recently they have started calling it Myelofibrosis.

I believe that I am still in the early stages...

Yes, I too have found this website extremely useful.

So much so that I wanted to start one of our own for Oz - Interested?

In any event, I hope that you see my message even though your original post was circa 3 years ago etc...

Best wishes and I hope all is going well in your world...

Steve

(Sydney)

[sand-bog in reply to socrates_8]

HI Steve, Nice to hear from you again. Re starting an Oz website - sounds good but I am not very good on the computer and wouldn't have a clue how to go about it. My limit is reading posts on this site and occasionally adding my own comments! Hope all is well with you, Cheers Sandra

[Mardi in reply to socrates_8]

Hi socrates_8- Have you joined "MPN AUSTRALIAN and NEW ZEALAND Support Community ? It's friendly and a great help.

I have pv jak2+ but am on hydrea and very well. My allele burden is only 6% so I am very early even though I'm 73. Only dx 3 years ago. I'm also on the British lung foundation site for my asthma and bronchiectasis. Most of the People on that site are very ill Using 24 hour oxygen. I have three inhalers and need a lot of antibiotics for the mild bronchiectasis. Hope you are coping well with your dx of early myelofibrosis. Marion Canberra .

[socrates_8]

Hey Sandra...

Nice to hear from you too...

I have acquired a new Domain name - 'MPN-Australia Online'

And I have started making up some /mock-up' pages but I still have such a long way to go at the present.

I am not a 'web-designer' per se, however, I can do the required web-savvy artwork in anticipation, and thereby create what is a 'Story-Board' of the web-site pages for my newly proposed site etc...

I just would like for Australians to have a website the equal of MPN Voice, which I believe is a fantastic resource across so many levels...

Best wishes, stay happy, healthy, and maintain your ever positive disposition...

It is so very important to us all...

Steve

(Sydney) xo

[socrates_8]

Hey Marion (in Canberra)

Thank you so much for your message...

I guess I am fortunate that I am still in the earlier stages of my condition, at the present... And overall, I am managing it much better today than I was a short while ago.

I haven't found the site you mentioned at this stage, although there is one called MPN Australia Alliance, that is based down in Victoria, and they do have a web-mailing list etc... Is that the one you are referring to?

In any event, thank you again and best wishes Marion

Steve

(Sydney)