Hi everyone,
I too have ET and have had it for 15 years. I am now 49 and was diagnosed after I had my 2 children.
I was on Hydrea at the beginning and because of the risk of developing Leukemia my doctor took me off it. I was then on Asprin for about 6 years but have stopped that too.
My count is now at 710 and goes up and down. I also have an enlarged spleen and have had the JAK2 mutation blood test and I am negative.
I don't totally understand what that means but my doctor said that I am lucky that it is negative. He also says that its not if I get worse its just a case of when. He says that this condition usually goes for about 10-15 years before things start to go wrong. Well I've reached 15 years and I'm starting to get nervous.
My doctor insists that I have a well balanced diet and a no stress life.
Yeah right..........thats going to happen....no stress.....
But he insists that stress makes this condition worse.
With the diet I personally don't think it changes ET at all but it does ensure our immune system is in top order and able to fight off whatever is thrown at us.
I too wish I knew more about this so if anyone has anything that they feel can help please let me know.
Good luck to you all and strength to all of us.