Hi, hoping this is the right place to put this but I am after people's experience/views due to the limited information I can find online! I have recently been diagnosed with ET off a bone marrow biopsy as negative to all the gene markers and max platelets so far of 550 (so already feel in the minority given most people seem to be far higher at diagnosis!). I had complications at the end of my pregnancy which caused doctors to look closer at my bloods but given I am only just 30 I'm now terrified of the long term implications of this disease and life expectancy.
Does anyone have any information on this or are there people out there on this forum who have been living with this disease for 30+yrs without complications?!
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Tashaea
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Hello. I you are ok. I was diagnosed with ET in my early 30's ten years ago. It was a shock and I remember wondering about life expectancy, especially as I had a young child. Information then and since seems to indicate normal life expectancy. Everyone is different though and it seems general health is important. I recently joined this site and have been to a couple of forums and they have been a support. The MPN website has good info too which I keep referring back to.
I was diagnosed 18 years ago, I was 19 then. I had a clot in left leg and that's how ET was discovered, but luckily no complications since. I was put on medications (Hydroxy) immediately to bring the platelet number down and now I use interferon. Life expectacy for people with ET is near normal, so you can have as normal life as anybody else. And because of much research being done and our young age maybe we will live to see a cure for ET and other MPNs.
If you have any other questions please feel free to ask, I will try to help if I can.
Hello. I am E.T. triple neg and you feel just as grotty as if you were positive. Join lots of forums, facebook have a few too. It helps greatly to talk to people in the same boat and of course MPN voice. Good luck. X
Thanks for letting me know - do you know if there are any implications of being triple negative vs testing positive to a gene mutation? I am finding it all rather hard to come to terms with as I feel absolutely fine at the moment at least!
I think we are slightly better off, not that it feels like it!!!!! I find the most important things are not to dwell on it all as it can really bring you down; You are better off getting your questions and fears answered by the people who are going through all this as you are. There are also some good groups on FB. You will not be overloaded with too much technical info which may scare you witless.
Get up in the morning to a lively piece of fav. music on top volume so you start with a smile, neighbours allowing of course!
You will find your own level of coping but just keep a smile on your face. XX
Hello Tashaea. It is a bit scary when first diagnosed but as time goes on and you mingle with us all here and hopefully get to patients forums too you will find much support and information to assist you. I am triple negative and to be honest at the moment all that means is that the cause of our MPN is not known - it may well be that we too have a mutation that is yet to be discovered - when I was first diagnosed 11 years ago only JAK2 was tested for and the other two have come along since then - more no doubt will be discovered. It also doesn't mean any difference generally in the MPN occasionally just the treatment choices. Although I was diagnosed 11 years ago (I am now 56) I recognise that I actually had ET symptoms for a good 15 years before - and in fact had bone marrow problems going back to when I was 17/18 with haywire white counts - back in the 1970s such things were not investigated too much once leukaemia was ruled out. I say all that to reassure you that blood problems can be dealt with over many years and in those years research continues to improve and shed more light for us. In my 11 years diagnosis so so much more information and research has come to light and it is all for our benefit. You will be ok over the years, just ensure you are under a consultant specialising in MPNs and keep coming on here for anything you need as we are all here to help with our experience as is MPN Voice itself who are all little stars and treasures along with being MPN sufferers themselves. All the best.
You sound the same as me except I have been diagnosed with ET since 1998 along with a second condition. Platelets usually 650 ish. No complications I couldn't manage. Since then there has been a great deal more research so more knowledge about how to treat what is a chronic illness. This site will offer other people's experience but you should be get factual information from your Haematology doctors. Also, if you google Essential Thrombocythemia MPN Voice you will get the clearest and most up to date explanation from Guys/St Thomas Hospital.
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