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Hi! At 49 I was diagnosed last month with ET Jak2 I had put my overwhelming tiredness down to the menopause. First.blood test since 2016 showed high platelets and after 6 months (lots of lost bloods etc) diagnosed and been to haematology. Telling others...
Hi everyone, I am new here and glad to have come across this great resource. Caring for my husband is challenging and stressful for me at times because I have long thought that he shows many characteristics of autism and ADHD. He has never been comfortable...
Hi I don't have a confirmation of ET I am just on here searching for answers. For over a year I have had vertigo, other dizziness and fainting plus fatigue at an extreme level (ie I can sleep most of the day). Following the initial symptoms a few months...
I'm new to this so not quite sure what to post. I was diagnosed with ET and JAK2 in August 2021 which came as a shock as my GP had told me for over a year that my platelets had been rising but it was nothing to be concerned about. I'm so pleased I got...
Hi I found out on the 4th April 2022 (8Days before my wedding) that I have PV. The wedding kept me busy but now that’s over I’m at a loss. I’ve been advised to quit my job by my consultant so I feel lost and I feel like my life is kind of over on it it...
I got diagnosed with essential thrombocythemia back in November and told I shouldnt need to start treatment until things got alot worse or I was in my 60s, 3 month later I had to start treatment which is fine for me, I have 3 children and my husband and...
Had kidney and ureter removed last year followed by chemo. Recent scan showed ureteral cancer so starting immunotherapy. Can’t find anyone else with the same diagnosis. Would like to know if treatment is effective in prolonging life,
Hi My husband was diagnosed with MDS four months ago and is being treated with Azacitidine. We've had it confirmed that his R-IPSS score is 8.5, putting him in the Very High Risk category. Just wondering whether there is anyone here with any experiences...
Hi everyone, I'm new to this forum so feeling a bit unsure what to expect. I've just been diagnosed with mds. I've had a bone marrow biopsy and luckily there's no leukaemia detected but I'm waiting for results on what my risks are. Has anyone else gone...
Am I in the right group?
