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@eileen11108

Erikaerika,
I just looked at NIH.gov and as of 2020 the median survival age of people with ET age 40 or under was 35 years. So some live longer than that.

Have you had a bone marrow biopsy and do you have a mutation such as JAK2?

You could consider getting a second opinion with an MPN specialist who handles a higher caseload of rare diseases like, ET, PV and Myelofibrosis.

Best wishes to you, Eileen

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Replies to "Erikaerika, I just looked at NIH.gov and as of 2020 the median survival age of people..."

That is such encouraging news. Thank you! I did have a bone marrow biopsy & I do have the JAK2 mutation. Whats interesting is that its not yet being picked up in my blood alone, which is why they were having a hard time trying to figure out why my blood count had been high for the past 2 years. She said the mutation is only appearing in 2% of my cells; but she did also say that they don't have enough research to know what that means exactly. So course of action is still the same regardless of the percentage of the mutation. It's all still very confusing for me. I'm trying to make sense of all of this. I've tried to do research but it's still just causing anxiety. I don't know what the percentage is that this might then lead to leukemia or if your on the medication for a long period of time it increases the odds of that happening. Can I ask what a MPN specialist is? Would I have to go somewhere specifically to find someone?