my daughter has recently been diagnosed with ET and JAK2 mutation at 20yrs. it seems this is very rare at her age and as her mum I really do want to understand more. if anyone has any advice I would be most grateful. we are awaiting bone marrow biopsy, mri and ultrasound. thanks
Hi again pastie and welcome to this corner of the Community……. I am Mike and I help out around our blood cancer groups.
I don't have Essential thrombocythaemia (ET) but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of this journey well.
Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Group Title’ and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00 where you will find one of team there to help you out.
We also have our Ask an Expert section but do allow a few working days for a reply.
Do check out for a local Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups….. the one I attend does have a few folks with ET in it so worth checking.
You may also want to check out MPN VOICE UK for some good information and have various support platforms.
Always around if you need further help or just want to talk.
