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).
After having my daughter, they put me on Anagrelide. And, by the way, no doctor ever, in this entire time, told me this was cancer, rather just a disorder of the blood. Same with PMF, its like a malfunction of the bone marrow, but not like Leukemia. My platelets actually got up to one million, two hundred thousand. And the anagralide brought the numbers down pretty nicely, except it caused migraines and sever anemia. One VA hematologist gave me Procrit shots, and i swear, it was like i had my life back again! At the worse time, my daughter was only 2 to 3 years old and my husband worked out of town alot. And the Anemia was sooooo bad, i couldnt get out of bed to take care of her!!!! I turned blue. And a friend came along and told me that my coloring was off....so I changed doctors again, until someone helped me. In fact, that was quite a constant theme of the 25 years with ET.