Essential thrombocythaemia - how has it affected you?

Hi everyone. I have just been diagnosed with ET which, as a 25-year-old who is otherwise fit and healthy, came as a big shock. I'm also a doctor so that doesn't particularly help with things... I was diagnosed after noticing petechiae on my legs (clusters of teeny tiny purplish red dots caused by capillaries bleeding into the skin). Other than that I was asymptomatic. My platelets were found to be >1000 and are still on the rise... meaning that because of the paradoxical increased risk of bleeding I'm not on Aspirin. My Haem team are considering starting me on treatment with interferon. I'm still very much coming to terms with the diagnosis because I would never in a million years have expected to be diagnosed with a condition that typically affects people over 60! Since my diagnosis I've been having a lot more symptoms - strange headaches (I have always been someone who gets headaches but these are very different to those), fatigue and the most bizarre burning/tingling sensations on my skin mostly on my arms, legs and head. Does anyone else experience these? Having this diagnosis has made me really question what I want to get out of life and to make the most of every day. I think something I'm going to find frustrating with ET is the unpredictability... not knowing if you're platelets are going to stabilize or increase and if so when. I just wondered how having ET has impacted on people's lives? Any advice or anything I should be aware of from the point of view of people with first-hand experience of living with this condition? Feeling very grateful to have a place like this to speak with others who understand. Looking forward to hearing your experiences. Charlie
  • Hello Charlie

    I'm sorry to hear about your recent diagnosis of Essential Thrombocythaemia. We do have quite a few members here on the forum living with ET so hopefully, we'll be able to connect you up with others who have experience of living with this condition. 

    There are 2 particular threads I wanted to signpost you to have a look at which have a lot of content and I'm sure if you post on those threads, the members will drop you a reply. You can find them here and here. I'm also going to tag in [@Devonsmum]‍ who has also recently been diagnosed at the age of 36. Hopefully, as I've tagged her into this reply she will see the post and reply to say Hello! 

    You can also use the forum search function to look for the term "essential thrombocythemia" and you'll find lots of other posts that you can look through. You might also want to have a look at the Blood Cancer UK forum where they also have a number of members living with ET. 

    I hope this helps you to connect with others. If you feel you'd like to chat things through with one of our team of nurses at any point you're most welcome to give them a call. They're available Monday to Friday from 9 am to 5 pm on 0808 800 4040. 

    Best wishes, 
    Jenn
    Cancer Chat moderator