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Profile picture for nohrt4me (Jean) @nohrt4me

@leene808 I have attended a few symposia abt ET and ran an online support group for pts before there was much online help. So I met a lot of fellow patients. It always seemed to me that younger people (under 40) seemed to have the worst symptoms. Did your Mayo doc happen to talk about this since you were young when diagnosed?

Seems so unfair that the ailment is manageable for those who are diagnosed at 50 or 60, but has some serious symptoms for those who are in the midst of work life and raising young kids.

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@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.