Changing the Conversation About MPNs

[hunter5582]

From the folks at the MPN Research Foundation for MPN Awareness Day. A really great presentation.

Presentation by Ruben Mesa and Claire Harrison. Moderated by Ruth Fein.

vimeo.com/590666862

[BlushNoisette]

Hi Hunter,

Yes I agree. My husband Steve and I watched it too. Excellent contributions from all three participants. Anyone who missed it, I think you can still watch it on the website.

[Zeus1]

Thanks so much for sharing the link.

[Magentas]

Hello, my friend. If it’s not too much trouble would you tell us why you found this enlightening?Don’t feel obliged, because you never post anything that is of no use, I only ask because I am one of the many, I imagine, that wade in and then wade out…due to the encumbrance of our plight and its the only way to remain semi sane.

So I guess what I’m asking is, is this an American thing, (non accessible if not, or non accessible if from a lower socio-economic class), is this pertinent for all MPN’ers?

Or, should I really take out the time and listen to this and get lots of hope even if I am on the other side of the world?

How is your PEG treatment going, dear? It’s been a little while, are you seeing results, are you having adverse symptoms?

Thoughts and hopes are with you.

[hunter5582 in reply to Magentas]

I liked the presentation more for its tone than the facts that were presented. The facts were nothing new for anyone staying up on the current research. The tone was hopeful. Ruth Fein shared her MPN journey, which started with ET, then progression tp PV, progression to MP, participation in a 2-drug clinical trial that treated the MF successfully.

Drs. Mesa and Harrison talked about MPN in a factual matter, not minimizing what we deal with, but putting a more hopeful and positive spin an where things are now and where we are headed. One commentary I particularly likes was that MPNers can't look at the historic longevity studies and apply those studies to themselves. The treatment options we have now and will have in the near future are better. We will not be able to use longevity studies until we have at least 10 years of data starting now. It will really take several decades of new data.

Dr Mesa (from the USA) and Dr. Harrison (from the UK) also discuss the world-wide effort to collaborate to improve treatment for MPNs. On the whole it really is a very positive take on where things are at. Realistic and hopeful.

I have noticed that some videos available here seem to get blocked in the UK or EU. I get that with copywrited entertainment videos, but not for free educational material. Hopefully the various governments will work it out some day.

I will be posting details on the PEG treatment shortly. Just had the updated labs done yesterday. The short version is that it is going great. All numbers looking good and absolutely no adverse effects from the PEG.

[Magentas]

Appreciate your time and in depth review, I found it very helpful, so, many thanks for your effort, Hunter.I’m so very pleased to hear and look forward to your update on your progress.

[Buggerbear]

Thank you for sharing this video, as it was positive and hopeful for all of us -- addressing the biggest fear which is progression.

I was shocked when Ruth Fein, after ET - PV and now MF - said she was able to walk 9 miles in a day. That is wonderful but everyone's battle with MPN is individual and I would say walking 9 miles a day is not the norm for most of us.

[mark382]

Thanks for sharing link. Can you tell me the title of the video as I get a series of them, but the titles don't seem to match a presentation. Perhaps they are being blocked as I'm in UK.

[hunter5582]

Changing the Conversation Around MPNs

Sponsored by MPN Advocates Network and MPN research Foundation.

If the Vimeo link does not work, this one may

mpn-advocates.net/mpn-aware...

[BluePeony]

Thanks very much for posting this, Hunter.

[Bluetop]

Thanks for posting -very upbeat and positive!

[Ettu]

Thanks for sharing.

Thanks also to the presenter and Drs involved for their time and expertise.

It’s so encouraging to have access to people with such a knowledgable and

enthusiastic approach to improving awareness of Mpns and their treatment.

[Bobadog]

Many thanks for sharing this re assuring presentation ,and I really look forward to hearing about the Peg update,Best wishes to you,