I’ve been on this forum for two days and it’s trult remarkable how amazing it is to be able to share and connect with others going through something similar. Thank you all! And thank you MPN Voice!
I see the site is UK based - where are you all from? (That is if I’m not not breaking any blog protocol?!)
I’m Boston, MA.
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JT_Marlin
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I moved to Devon from East Sussex last August so have been negotiating different health authority/hospital etc. Would love to meet up with any locals. I'm not far from Cornwall too.
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I’m not. I’m from Cardiff but my Husband grew up in Birmingham, came to University here and stayed. His whole family are massive Albion fans so I’ve become an honorary Baggie. Excited to be top of the league right now 😬
Just seen your from cardiff, does your husband have a connection with west brom being as he's a big baggies fan? P.s. I only really have an interest in football when the World cup or the Euro's come around.
Am from Wisconsin USA as well. Do you have any recommendations as to specialist(s) to see locally? Have ET and feel getting a second opinion would be beneficial.
I have heard Dr. Mike Mullane is someone who specializes in this.... There is a list of specialists in the area. I will look for it and send to you... happy to hear I have someone close!!
I’m blown away by this forum and the people who make it what it is.
I know we’re all going through our own situations but the unity and acceptance is like nothing Ive experiences before. For whatever it’s worth ....Thank you all.
I live in Hungary (a small European country in the middle of nowhere). This forum is a lifesaver and knows more about anything than my Dr Blood. Thank you, everyone.
Diagnosed 3 weeks ago, this forum has been fantastic, informative and so helpful in trying to understand this condition. Thank you all on here, and especially those who give time and attention to monitor and run the forum....is that just you Maz??
I'm Northern Ireland and would be absolutely delighted to meet anyone else in my neck of the woods. Very lonely having ET and having someone I can chat with face to face would be fabulous!!!!!!
Tottaly agree. We have the kindest and most empathetic people on this incredible site. Always there to listen, advice, understand and help where possible. It’s a group of friends in the same situation as yourself who know how you feel, and experience those feelings themselves. Thank you Maz and all who make this site the lifesaver it is Sandy x
I also am relatively new to the site and most grateful for it and all the people with calming, helpful thoughts and generosity in sharing experiences. I am from the US - Maryland.
I'm from North Yorkshire on coast. I agree this forum has been a lifeline since I found it in Sept.2018 when diagnosed with ET. Thank you Maz and administrators for uniting us globally! Fran
In Kansas City. I just had a physical EVERYTHING normal and dull EXCEPT platelets 566. Now I’ve been referred to a hematologist. They sent me some paperwork and the hematologist is in the cancer center. Scared. I even had an abdominal al ultrasound. Again, normal. The doctor who aids my physical said nothing about cancer. So I’m undiagnosed. Maybe my next blood test will be normal. Looking for answers now.
I'm from Australia. Seems like MPN voice in the UK is the largest forum around for MPN's but we do now have a new one started in Australia called MPN Mate that Socrates_8 (he replied to you above) started. It's small so far but another good site. He has out up a bit of stuff on the latest research that relates to MPN's and trials of drugs etc. Well informed. He is also trying to raise awareness of the disease in Australia as it is almost not known about here in Australia with very few drs even knowing what it is. Seems like the UK is well out in front on this topic.
Anyway welcome to the gang and please feel free to check out MPN Mate. It is nice to share with others like yourself and have a place to ask questions.
Seattle WA here! My 17yr old son was diagnosed in Nov 2019. It’s been overwhelming! Even though it’s only been 3 months...it feels like I’ve stressed enough for a lifetime. I hate having my son go through this. I’m praying for cures!
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