Just like to introduce myself . My name is Helen . I was diagnosed with ET in May. I had come back from Jamaice and couldn't stop itching . I suppose I was lucky as a new GP somehow suspected what I had and 2 weeks late I was having a bone marrow biopsy ! I talked all the way through it and my heamatoligist got my life story. My platelets were very high and HB low . I was put on aspirin and hydroxurea . My platelets have come down to fairly ' normal' and unusually my HB went up . I have been given a 3 month appointment woo hoo . I go to Hinchingbrooke hospital in Huntingdon . It is a very scary diagnosis but I looked on it as a wake up call I had already stopped smoking and I now ride my bike more and eat healthily . I have to say I feel better than I have in a long time but maybe I'm lucky and the itching has stopped. I am off to Canada on Tuesday and the insurance honoured it . I hope the long plane journey is ok .

10 Replies

  • Hi

    am postEt-MF ! Have had journey with bone marrow 4times ! Also hydra then a few years later Auegrelide. Now only asprin watch and wait! 9years from diagnosed with Et .,

    Great you are dealing with diagnosis , keeping a good dietplus exercise! Keep well ! Best wishes .

  • Thank you I look forward to getting to know you .

  • Hi me too! Am in North Devon England! Do you live in USA??? Or near by???

  • I live in St Ives in Cambridgeshire so England but not the St Ives near you . We came here for hubby's work but will be going back to West Sussex when he retires all my family live in the south .

  • Hi elderberry x I to have et had it nearly 7 years on April and then hydra for nearly 6 years go every 3 months hospital consultant in Boston uk glad you are coping ok always here to chat x take care we all together x chrissie

  • Sorry helenberry

  • Thank you and maybe elderberry is right lol

  • Hi Helenberry, pleased to meet you. I was diagnosed with ET around 18 months ago just by a vigilant GP picking up the high platelet count on a routine blood test. I`ve not had a bone marrow biopsy and am JAK2 negative. I have been on two long distance flights to the States since diagnosis and had no problems, but did check with my Haematologist before going. I just drank plenty of water and wore the old flight stockings just to make sure!! Good Luck.

  • Thank you for that it's reassuring I did check with the haematologist and she said the same as you . Really we should be the safest person on the plane with the meds ! . I'm Jak2 positive but don't think it makes a difference amazing to get an acquired gene mutation !

  • Hi Helenberry, I'm a PV sufferer not an ET but a lot of the symptoms are the same. You've come to the right place. This forum has some wonderful people on it who support you when you need it. Welcome and best wishes Aime x

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