MPN mutations are not inherited, but researchers think a predisposition to mutate might be. Family MPN clusters are not unheard of. I told my son and brother to mention my diagnosis as part of family history and to keep an eye on routine CBCs. Testing was not deemed necessary.
I wear compression stockings on long travel trips.
Be VERY wary of "research" that alternative practitioners make about platelet reducing treatments. It's not just the number of platelets we have but the stickiness. Best lifestyle changes I've found in 15 years with ET and talking to others:
1. Get daily mild to moderate exercise; whatever nudges you out of your comfort zone just a bit.
2. Quit drinking or smoking.
3. Strive for a heart healthy diet that may help reduce stroke risk.
4. Do not obsess over 25 point fluctuations in blood counts; it's the rise or fall over a year that is significant.
5. Drink 64 ounces of water on top of juice, tea, coffee, etc.
6. Sugar and carbs may increase fatigue, so try to look for other options. Snacks are a good place to make changes.
I was diagnosed with ET in February of this year. I did have a bone marrow biopsy. I have a CALR mutation. Hydroxyurea is what I am taking. Still in process of titrating the drug to try and keep me in a normal range of platelets. That being said, I have periods of extreme tiredness. Sometimes the top of my head feels "light". If I rest for a while that really seems to help. I'm just wondering what other ET patients have experienced. You also mention sugar free snacks etc.,. I am also type 2 diabetic, non insulin. Can this make my diabetes worse? I have also experienced more neuropathy over the last few months since starting hydroxyurea. I don't know what to think. My doctor doesn't seem to think the ET or hydroxyurea is a cause. Any opinions? Anyone? Thanks