Hi guys, My name is David Wallace. I am based in the United States (N.C.) and have been a Polycythemia Vera patient since 2009. I created a website that you may have seen - PVReporter.com . PV Reporter is an MPN Patient Research Hub covering PV, ET and MF. It was created to fill a gap in the MPN patient community providing “easy access” to pertinent information on Polycythemia Vera (PV) and all Myeloproliferative Neoplasms using MPN Search.
I also read (and link to) MPD Voice, and find it is an excellent resource. I am a newbie here and just wanted to say hello. Check out the site and let me know if you have any suggestions.
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Ay up David. . Welcome to this 'happy band' - I'm not familiar with your site but just had a glance and it looks brill so hats off to you. I will have a proper look but ont face of it Id say keep up the good work. This resource is fandabbydoubledozy - thats a britishism - for those in the know. Cheers for posting the link as any resource we guys can draw on is all to the good. Hope to hear more from you buddy. Cheers
Thanks for the good word JediR, glad to have found this group "across the pond", always cool to make new connections and friends who are in the same boat. You got me on the britishism term.....but that brought a chuckle! I just completed an article about a new "Physician based MPN Newsletter"....hope you find it an interesting read - pvreporter.com/new-physicia...
Hi David, I've only had a quick but love the website. To see everything there under one roof - videos, patient blogs and the search for absolutely anything is brilliant.
What a brilliant resource and what a lot of hard work you have put into it thank you. I think I may have read some of your information through links on one of the facebook MPN groups. I want to share your website and am seriously thinking about it now, but I haven't gone 'global' about having an MPN and even those who know very few actually understand, I probably played it down :-)! Thank you for sharing your work with this lovely group.
Hi Diana - Appreciate the kind word, I have put a lot of hard work into PV Reporter to make it an excellent resource for all. You probably have seen me on some of the MPN FB groups. I do post from time to time and follow the interferon group closely, as I started on Pegasys about 3 months ago and have seen good results so far. Please do share the website freely and be sure to check out the unique MPN Search engine - pvreporter.com/search-for-i... - it works spot on and recognizes our abbreviations (PV, ET, MF, etc.) much better than google.
Regarding your "haven't gone global about having an MPN".....I do want to mention, I am always looking for patient stories, so if you want to share your story on PVReporter at some point, please let me know. I firmly believe the more patients that come forward, the better off it is for the MPN commmunity as a whole (and the UK is my #2 audience btw The offer to share your story is open to all you guys and gals, just drop me a note - david@pvreporter.com and we can hash out the details.
Hello David!! Just discovered your website accidently but I am glad I did!! I don't know if you will see this post as the thread was 7 years ago. I am from Atlanta, GA and had had PV, JAK2, and ET for the last 5 years and see a Dr. from the Emory Winship Healthcare. Enjoyed the videos...yes it is like you are on a roller coaster!!
Hi Buggerbear, I am glad you discovered PV Reporter and find it helpful. I'm in Charlotte, so not too far, small world! Stay tuned as the website is constantly updated with fresh information.
hi all, david your site is great, and can i suggest another great site- leukaemia.org.au/ based at the austin in melbourne- australia- dont let the leukaemia scare you off- it is a brilliant resource for information re mpns although it is base in aus, the information is accurate and up to date- cheers jo-ann
Hi jo-ann, thanks for the link on the MPN info on your leukemia Australia website. Lots of good info there as well. Our U.S leukemia site also covers MPNs, but I think we are the red-headed step child, lol!
How nice to see your entry on the site and welcome!
I also was diagnosed with PRV in 2009 and take hydroxicarbamide as well as having venesections.
I had a quick look at your site, which looks great - will read in more detail later.
I agree, MPD voice is an excellent source of info - have you seen patientpower.info?
Also an excellent source of information for MPN patients and well worth a look.
My husband and I met Andrew Schorr and his wife recently, and thoroughly enjoyed their company, a lovely couple. Andrew works extremely hard for the MPN cause......
Hi Louise - Thank you for the warm welcome and kind word on PV Reporter, you folks are right friendly round here (my southern accent)! Actually I am very familiar with Patient Power and Andrew is a friend, although I have not had the pleasure of meeting him or his wife personally. I know he does quite a bit for us MPNers. I live by the "empowered patient" school of thought, so that is a message we both share.
Is interferon/pegasys used much in the UK for PV? It's usage is slowly gaining favor in the U.S., but HU (hydroxyurea in the U.S.) remains a popular choice as well for cytoreduction therapy.
Hi David, I am new to the MPN website, myself, well I have ET told last year, and at first I was very scared, but once I found the MPD Voice website my life is so much better and I am not afraid anymore thinking that I was the only one in the whole wide world that had it, and a lot of it is down to all these lovely people that help and support each other and now you have introduced us to this wonderful website, had a really good look at it and really impressed, so thank you very much. Oh and welcome to good old BLIGHTY
Hello Superwoman, sorry to hear about your ET diagnosis, but glad you found MPD Voice and this supportive group in the forum. I remember when I was first diagnosed, started reading some things online and then thought OMG, only have a few good years left....then I found a helpful group through the MPN Foundation and hosted a couple of group meetings for fellow patients. Always nice to share info with people who are in the same boat...we get it! Thanks for the good word on PV Reporter, be sure to sign up for the newsletter to stay abreast of the latest happenings. You caught me on BLIGHTY.....had to google that one. Best to you - David
Hi David, great website too. Welcome to the forum, everyone is so supportive. Like Superwoman I was very scared, uninformed, etc until I found the MPD website, but the more the merrier. The more info we have the better. Kind regards Aime
Hi Louise, I am curious if the same shift is taking place in the UK. I do see Dr. Harrison as a study chair on MPD-RC112 clinical trial - Randomized Trial of Pegylated Interferon Alfa-2a Versus Hydroxyurea in Polycythemia Vera (PV) and Essential Thrombocythemia (ET). I will send Maz a note....I too am not medically trained, but always eager to learn more. Some of the MPN research papers can be thorny to decipher sometimes.
Thanks Louise, I just sent you an email. Major thumbs up on the research and trials....it is an exciting time with all of the new discoveries taking place!
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The offer to share your story is open to all you guys and gals, just drop me a note - david@pvreporter.com and we can hash out the details.
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