Introducing myself

[andrewschorr]

I am an American with PMF who lives in Barcelona and has been meeting several people with MPNs in the UK and Europe. You may know that I run a website: patientpower.info/mpn and interview experts and inspiring patients. If it is okay with you I will let you know when we post new videos such as with Prof. Claire Harrison. I have interviewed her many times and, as you, know she's the best! Also, I am starting an ask the expert video feature where you can send in questions and experts answer them on video. Soon I'll post a discussion about bone marrow biopsies with two world experts. So I am new to this group. I hope you will welcome me. Let me know what you think.

[Aime]

Andrew, welcome to the group. I would be delighted to have access to more information about my PV. Thank you. Kind regards Aime

[andrewschorr]

Thank you!

[Hidden]

Welcome Andrew, yes Claire is the best ! Sounds very interesting and helpful what your doing . Jase .

[catkinspolymer]

oyez to that

Town crier

[andrewschorr]

Thanks. Take a look at patientpower.infoi/mpn and feel free to give me suggestions. A little about me in the meantime: I was diagnosed with chronic lymphocytic leukemia in 1996, treated in a clinical trial which worked. No treatment since 2001. But in 2011 I developed a DVT. Blood tests eventually showed it was PMF. Moved from US to Spain by choice, started on ruxolitinib in Fall 2012. Symptoms all resolved. Doing well. Devoted to patient education and empowerment in US and Europe and hope to make it global.

[Twinkly]

Hello Andrew and welcome .was it you who came to the U.K recently .met up with our Louise in Cumbria to make a new video ,about MPD in this country?? I live near to Cambridge so I attend the addenbrooks teaching hospital ,my head of team is prof green .he is a foremost expert in our problems, I guess you already know that..he works hand in hand with Clare Harrison ,at st Thomases in London .who I consider to be an earth angel ,( by the way).....6 months ago I was extremely ill..it was ruining my life, I couldn't function ,so I was asked to volunteer to become a lab rat for addenbrooks on the Majic trial ,,I agreed ,with out hesitation ,I am now taking ruxolitinib every day ,it's still early days ,,swings and roundabouts,I won't bore you with the details, but one thing is for sure ,we have some brilliant doctors and team nurses working on our behalf ,,my team are so supportive ,I can page day or night,email any time for advice, is it the same ,all over?? I wonder ,or am I the lucky one ,, Twinkly Xxxx

[andrewschorr in reply to Twinkly]

Yes it was me. I love Louise and Stephen! They were so gracious with their time. Her mom too. I have to come back. We are editing the video now that shows the burden of pv. As for Prof Green I'd love to meet him. And I have to come to Cambridge April 20-21 to help produce a town meeting for patients with another leukemia. What do you think about an MPN town metering with Prof Green there that Sunday April 22? Would a Sunday afternoon be ok? I can try to get the funds and work with MPDVoice. Or would this duplicate meetings that have already happened or planned?

[Stevesmum42]

Welcome. Information is empowering , this is why this site is so wonderful for us all with MPNs, thank you. Sandy.

[andrewschorr]

Thanks. Yes I think info, especially with rare conditions like this, makes all the difference. We need to get to experts in the field, get a clear picture of our personal situation, and get the state of the art care we need and deserve.

[Twinkly]

Well of course we want you to come ,I would work with you to make it happen .but maz is our head of MPD voice and she is the lady to ask ,,I know prof green only as our guvner ..but I think if he was approached and he was here and able he may come,we do so want these forums as many people are still fumbling in the dark ,not having Internet access ,our doctors are so stretched often we don't get time to ask all those questions ,that to us have elusive answers, also personal information ,on diet and fatigue coping strategies , sleep patterns which change on a regular basis. I think it's best to ask the buddy who we trust how do you cope?? Because let's face it ,we live it every day so we become the knowledgeable ones ,,,,, Twinkly. Xx

[LouisePRV Volunteer]

Hi everybody, morning Andrew!

It was so lovely to meet you, Esther and the rest of the gang - you were all a delight and we had such a fun day with you all.

Great surprise this morning to see your post on this site, if you come to Cambridge in April, Steve and I will try and come down to see you - our elder daughter lives nearby.

Hope you're well and that the US trip was good.

Very best wishes to everybody out there ( hi Violet x)

Love

Louise

[andrewschorr in reply to LouisePRV]

Hi Louise, we are polishing the edit for what I hope will be the first video with you. We have so much footage. This one, per the funder's request, is on the burden of pv...so it shows all you've been through and adjustments you've had to make. I am hoping we can edit another that's how life goes on and how you enjoy all you can. Stacey will be in touch this week. Happy to be here. Again, hope folks look at patientpower.info/mpn

[beetle]

Hi Andrew. Yes, welcome to this forum. Your face is already familiar to those of us who have done much online research into our conditions and your contributions are always welcome. I for one look forward to seeing more of you here so thank you for your contributions. I am a firm believer in the 'empowered patient'.

[andrewschorr in reply to beetle]

Thanks!

[Twinkly]

.O.K. It's time to let you know ,, my name is Violet,. And Louise is my best buddy,,

[andrewschorr in reply to Twinkly]

yes, i think she read me an email from you. How do I reach Maz?

[Twinkly in reply to andrewschorr]

Www.potterspride.co.uk

I will put you in touch if you email me direct ! She is our number one..

[andrewschorr in reply to Twinkly]

i went to the email contact on that website but it wouldn't go through

[Mazcd Partner MPNVoice in reply to andrewschorr]

Hello Andrew, nice to see you on this forum, we have been in touch with each other last year, my email address is [e-mail], I look forward to hearing from you again. Best wishes, Maz.

[graymare]

Welcome Andrew. I have ET, JAK2 negative, currently on Interferon alpha and platelets normal. I would love to keep up with the latest research on my condition but am hard of hearing and so videos with no subtitles aren't as helpful for me as text is. Don't know how many others with MPNs are also deaf, but it would be great (but I understand more work) if we could read what the experts are saying. Your project seems very helpful and interesting. Best of luck with your health and your research.

[andrewschorr in reply to graymare]

we are usually posting transcripts of the interviews too. when we have them ready there's a button for that on the same page as the program patientpower.info/mpn they usually follow by a few weeks after the video posting

[Sherry2]

Hi Andrew

Welcome and Thank you for making this happen.

It is angels like you and Maz that help to make a difference, otherwise we would all be fumbling in the dark.

I look forward to your postings.

If you are covering the London area, I would love to help you

Sherry

[Nirbhebe]

Welcome Andrew! Thanks for sharing information. I'm excited to check out your website! I am also an American. I live in Minnesota. I was diagnosed with ET 6 years ago.

[andrewschorr]

Thanks. You can help! And yes, I'd love to do more in London and beyond, whatever helps people with MPNs. I may be back in London in mid March and would be happy to meet. I met with Jn from MPDVoice a couple of weeks ago.

[Twinkly]

[e-mail] Try this it's me at home , violet ,x

[Hidden]

Welcome Andrew. This is what is so good about MPN Voice and HealthUnlocked. We can chat to other people who also want to know more about how to help ourselves and all the new research and developments that are out there.

[malachy]

Welcome Andrew! I hope we get to meet you at one of the forums. Am I too late to post a bmb question? I had a virus which floored me for a few weeks and didn't end up having the energy to email the question I wanted to ask. No worries if I am too late.

Thanks

Diana

[andrewschorr]

So sorry, yes we already recorded the video, will start posting soon. Feel good!

[malachy]

I look forward to seeing the video! Thank you, I am much better :-).

[markejon]

Hi Andrew, I hope you don't mind me re-posting the video links on mejthrombocythaemiacommunit...

Thanks,

Mark