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@hdollar1

I was diagnosed with ET at 27. I had been having unusual, extensive bruising and severe fatigue, my doctor did labs and referred to hematology for high platelets. I was misdiagnosed with Von WillIebrand Disease initially and went for a second opinion. I do not have Von WillIebrands, but do have ET, JAK2 positive, and platelets climbed to 700. I had a bone marrow biopsy which only showed ET. It is a life altering, terrifying diagnosis to face, especially at my age when there are hardly any studies to be found on people my age with ET. Life expectancy is a very scary unknown for me, especially with 4 little kids that I would love to be here for for a long time! It's terrifying to think about not being here for them, but stressing over it will do nothing, so I try not to. I was started on 1 baby aspirin a day and have labs every 3 months. My hematologist followed me through my last pregnancy, which was the first pregnancy with ET that he or my high risk OB had ever managed! It seems to be very rare to be diagnosed as young as I was. I was increased to 2 baby aspirin a day immediately after delivery, and have kept to that regimen since. I am now 31 and have had no complications regarding the ET. My hematologist plans to start HU when my platelets hit 1000. Luckily in my pregnancy my platelets went to a normal level (pregnancy naturally lowers platelets) and they have stayed around 400 since

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Replies to "I was diagnosed with ET at 27. I had been having unusual, extensive bruising and severe..."

I was diagnosed with ET at 37 with platelets at 890. I started on aspirin only and was monitored every 3 months. I never had any symptoms. My hematologist told me he would put me on chemo if my platelets got to a million. That never happened and I am now 67. I was very afraid initially. But I adjusted and over time my platelets stabilized in the 500s. Very recently I learned I am JAK2 positive so I started on Pegasus 2 weeks ago. So far no side effects. So just keep enjoying your family and try not to dwell on this. Who knows what will happen to any of us!