← Return to Essential Thrombocythemia (ET): foods, diet, nutrition?

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@cupofsunshine

hello. I was diagnosed with ET over 25 years ago, while young and in the Service (Navy), at the age of 27-28. I'd like to share my experience living with this. Tho I am not JAK2, I have other mutations. This happened in 1998, when I was carrying my first child and they found high platelets, randomly, on all my monthly blood testing. The Navy hematologists found it and said something about 7 months in. I went on , not only to raise my beautfiul daughter, but again, having a son while on treatment!!! (just 11 years ago). Then, my E.T., just last year, after 25 or so years, mutated in Myelofibrosis. Looking back, I wished I would have tried to live an even fuller life with it, while young because the Navy wanted me to do two sea tours and i opted to get out. If it werent for the mild to mid neuropathies I suffered from throughout that whole time, i would have never known what I had. But I lived a great life anyways, and being that I couldnt run anymore (was a big youth runner), I spent alot of time riding horses and even goat herding (the last 15 years).

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Replies to "hello. I was diagnosed with ET over 25 years ago, while young and in the Service..."

Do you have CALR mutation? Those of us with CALR run a somewhat higher risk of developing MF. I think researchers are still trying to figure out whether there's a predictable genetic pattern for ET patients that indicates eventual MF progression.

Wishing you good care, and I hope you continue to find happiness in your kids and contentment with your life. Having a small flock of sheep in retirement like my Gramma was once a dream of mine. No way that's going to happen, but I enjoy spending time at sheep shows.

I bet you would have a lot to offer FFA or 4H kids interested in goats! Seems like they're always looking for mentors, people who can answer questions and give the kids advice.

Gotta look for open windows when the doors close.