I’m 43 year old female, diagnosed with ET, Jac2+ in November 24. I’m currently on daily aspirin. Diagnosis was a bit of a shock, been attending GP for symptoms I thought were hormonal related but turned out this was going on. My GP advised to just get on with life and be grateful I don’t have anything more sinister to deal with. I have a great consultant who I’ve seen quite a bit since diagnosis but this will soon become 3 month visits. With the exception of feeling tired and headaches I’m feeling ok and getting on with life, I work full time and have 2 children to look after. I’m slightly concerned about the future and what this will/ could grow into. Any advice on symptoms , progression markers to look out for would be most welcomed. Thanks so much.
Recently diagnosed : I’m 43 year old female... - MPN Voice
Recently diagnosed
Hi the best site to go on to mpn voice it will give you a detailed account of et jak2 and a better bit advice is join mpn voice they. Have a buddy system where if you want they pair you up with someone around about your age same condition I have et jak2+ since 1994 I have had my buddy for years she stays in London and I am in Scotland we have met once we have seen each other once when we do talk on WhatsApp we rarely talk about our conditions but have become great friends Stay safe
Scottish terrier
I was told I would probably die with ET not from it.
I was diagnosed with MF 13 years after being diagnosed with ET, I didn’t feel any different, my blood counts changed though. I became more anaemic and after a bone marrow biopsy was prescribed different drugs. I was on aspirin only until I was 60.
You’ll get lots of information from this site and MPN voice. Everyone is different and the disease is different in everyone! Some people never have any symptoms, others do!
It is a bit of a shock to the system, isn't it (I was diagnosed at 37)? Like you, I was working and had a child under the age of ten. I have been fortunate in having had few MPN symptoms (with more side effects from the medication than my ET CALR) and have mostly been able to get on with living life normally. This site has been helpful too, though there can be quite a bit of jargon. Best of luck!
Hi I think you are doing amazing. A shock to your system it is really and a lot of life changes happened to me. A lot of people may have different ways of managing symptoms and you will hopefully in time find your own way. Mpn has a lot of good information on and there are a lot of us out there who don't mind you reaching out. You can drop me a message anytime
Hi there! Totally understand the shock that comes with diagnosis at a young age. I was diagnosed with ET (MPL mutation) just shy of my 42nd birthday. I also understand the worry of the unknown of where it will go, and the natural worry for your young children...I was the exact same. As many here have said, you eventually learn to accept it and cope. I have found this forum to be immensely helpful both with helping me understand what life with an MPN means and with connecting me with some wonderful people who've shared their own experiences.
Feel free to send me a message if you'd like. I'd be happy to connect and answer any questions you have. Sending you big hugs from NYC as you processes all of this.
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