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Hello Tessa, my daughter was diagnosed with ET when she was 16 (actually she went for an iron level test as she was then a vegetarian and was told that her million+ platelet count meant she either had cancer or a cold!). I am very interested to hear of the experiences of other young people with the condition as none of the Drs here have diagnosed anyone so young and they have no idea how this might progress for her. My daughter is now 20 and on aspirin and her counts have been steady around the 600-700 mark. She has splenamegalopoly and there is an issue with the formation of her red blood cells. So far we feel very lucky and she has such a great sense of humor that it is sometimes hard to tell how much of an impact this has had for her. Anyway - if anyone know of someone as young as she is who has been diagnosed I would love to hear about their experiences. Thanks. PS steer clear of the chemo as long as you can - I have had very minor doses for RA and it ain't pretty!
Replies to "Hello Tessa, my daughter was diagnosed with ET when she was 16 (actually she went for..."
My daughter has had bleeding from her nose and we are hoping that her symptoms will stop at that. So, no, she hasn't really had anything too dramatic in the way of symptoms so far. We are in Australia so she hasn't been to the Mayo Clinic but I have found their website to be the most informative. Glad to hear that you have been symptom free and hope things stay like that for you.
I have found that drs can be either rather dismissive of this condition or over excited and want to test for everything! My daughter has been through the screening process to be put on the bone marrow donors list if things should flare up but I have to say I am with you - If you are having no symptoms and your counts are steady then the aspirin is doing its' job and there is no need to upset your body with additional drugs (especially as the side effects can be unpleasant). Take care, Maddie
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I am glad to hear from you!!! I too am interested in hearing from people who have been diagnosed young, i was 27 which is young compared to everything I have read from all the doctors I have talked too so 16 is REALLY young. I am glad her counts have been stable under 1 million. Do you know why they dropped from over a million? I plan to stay as far away from the chemo for as long as possible. I hope she too can stay away from it for a long time.
So far everything for me has been unremarkable. I still would have no idea i had the illness if I hadnt had the blood work. Does your daughter have any symptoms? Has your daughter been to Mayo Clinic?