Went to the MPNVoice Living With MPNs day yesterday as I am fortunate to live only a tube ride away. Amazingly the auditorium was pretty full despite the on/off rail strike.
Lots of good information including potential future developments. I thought the most useful presentation was Proff Mary Frances Mcmullin’s ‘doctors consultations advice’, as it would work for anyone heading for a first consultation for just about anything.
But MPNVOICE is also about community. Met one friend of ten years who is 20 years in, 10 ET and 10 MF and looking good on rux’. One SCT buddy for first time, he is preparing to go early next year. One SCT buddy now two years out who turned up to help others. One nice healthunlocked friend as arranged here, Id-ed me by wearing my Where’s Wally red kickers! Was introduced to a couple, husband newly diagnosed, who will follow up buddying through Maz. And not forgetting reacquainting with the excellent MPNVoice team.
The Myelofibrosis breakout group was the biggest I have been in with 30+ patients/partners.
Hope it was enjoyed by those who joined online. It had a worldwide audience. As I walked to the station with a nice ‘young’ kiwi girl she told me her parents had watched the whole thing in NZ!
All credit to Claire Harrison the driving force behind it all.
And of course no one looked Ill!
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MFBMT2011
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absolutely agree! I went with my wife and found it so interesting to hear about all the research and possibilities of new drug treatments. The best thing was to hear others stories and realise we’re not alone.
I also went on Saturday with my husband. This was the first time of attending an event like this and we were so impressed with all the information given in one day. Not used to concentrating so much (now I’ve retired), trying to take it all in! Couldn’t believe how many doctors and professors were there to answer all the questions either and finding out how much research is going on. I also managed to meet a doctor from UCLH who I was referred to in lockdown and had never actually got to see ( only a telephone conversation) so was really pleased to speak to him. It was such a lovely, friendly place to be as I don’t know anybody else with an MPN. I found the patient speakers really inspirational too and think it was important to include them in the event. I am four years on from diagnosis (ET blurring with PV) but I feel I want to find a buddy now as I think it would be great to be in contact with a fellow MPN’er. I also bought the recipe book so will be shopping for that this week. Just want to end by saying a great big thank you to everyone involved in the organisation! Elizabeth
I went too. It was my first time and I thought it was excellent. The range of speakers was very impressive and their talks were short and tightly focused. Some times it was clear that they would have liked to say more but they kept to schedule and were very informative. I found the talks about research and future developments were particularly interesting. It was all recorded as well as being available on Zoom and we were told that it would all come up on the MPNVoice YouTube channel in due course. For those that came in person, there were breakout groups and I was also in the MF group, which I found very informative and often quite moving. There was also a panel session during which some pretty difficult questions were fired at a truly impressive group of around 15 leading consultants who did their best to answer them. Well done to all who spoke, including the patients, and the organisers who did a great job too.
thank you Chris for coming along, it was lovely to see you again, and also thank you for talking to people about SCTs and for wearing your 'stripey' shirt so I could find you easily! A good day and it was so lovely to see so many people in-person. Maz
Hi Maz unfortunately I had to miss this year’s conference which obviously was excellent but I will watch out for the link on u tube. I ordered the recipe book on Saturday and it arrived today😁. Really looking forward to trying the recipes. Best wishes from Northern Ireland. Margaret
Hi Margaret, shame you missed it, but as you say, you will be able to watch the videos. Thank you for ordering the recipe book, we appreciate it, and hope that you enjoy the recipes. Best wishes, Maz
Hi Chris, the detailed accounts of your experience with SCT has been very helpful to me, thank you for sharing. I live in Canada and am wondering if there are any links to the MPN Voice conference that discuss SCT, new treatment options etc
Have a look at the MPNVoice website. Their items tend to be available worldwide. I believe Plans are to put the presentation on their website and utube.
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