Hi @samlupowitz ,
I had to look up what ECD is because I never heard of it before. It seems like it is more rare than myelofibrosis which makes you even more special! Glad you are doing well on the med for ECD and your own method for eating that works for you. I agree with you that what we eat is super important for our health and how we feel. I also think daily exercise is very important with a mix of cardio, strength training, flexibility, etc.
I wish you continued good health and thank you for sharing that you have a dual diagnosis. I have only been diagnosed with PMF for 12 months and I do have CALR1 mutation but no symptoms. So I choose no meds other than low dose aspirin for my high platelets. I like my new insurance and primary doctor now after what I would call a very poor experience with what I first chose once I became 65 less than 2 years ago. Live and learn I say. When you don’t feel comfortable with a doctor, I feel it is best to find another!
Stay positive!