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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (747)Comment receiving replies
@nohrt4me hello there ! she did not mention that being younger would mean worse symptoms. She was just amazed at how long I’ve been dealing with this. I asked her if she had any other patients who have had this disease for as long as I’ve had and she said yes, and that made me feel a little better about my future. When you get to this point, it’s always a question about how much longer you have but 20 years ago I knew I was gonna live at least that long. It’s a chronic disease manageable with medication and healthy lifestyle and I don’t have the TIAs or the migraines anymore, so I’m grateful that I got my platelets down.
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@leene808 I think one of the questions researchers are trying to answer is at what point can the mutation be detected before platelets start rising. The theory is that the mutation may occur many years or even decades before ET becomes evident.
Anecdotal info only, but I've met a number of women like me with a history of miscarriage who then started running high platelets in their 50s or 60s. Women with ET do seem to miscarry at higher rates, but maybe only correlation, not cause.
Glad to hear you are holding your own without TIAs and headaches! It's been 18 years for me, 8 on HU. So far so good, but I am 72, so didn't ET wasn't "active" when I was young, except maybe the miscarriage mysteries.