I was diagnosed with ET in May 2015. A good doctor in Venezuela South America diagnosed me as we lived there as missionaries at the time. I did have a blood clot, though now resolved after a year and a half of blood thinners. So far they have not found anymore. It is or can be serious if we don't take it serious, but, yes, it could be a worse disease. I am followed by oncology and have regular blood work. I have had a few bumps in the road, especially when I have had to have steroid shots or treatments, since the steroids are what they give to the patients who have too few platelets, to increase their platelet production. I needed the steroids for severe back and leg pain, until I had back surgery. Things are much better now. But it does demand you and your doctor pay attention to your blood readings. We have had to adjust the Hydrea or Hydroxyurea several times during the last few years while I was undergoing treatment for my other problems, chronic lung problems, hip replacement and back surgery, and sciatic and osteoarthritis problems. But at 72 I feel I am doing pretty good as long as I keep up with my meds and lab work. I do have what I consider a few side effects, but hard to tell which effects are because of which medicine. Mainly my feet. I have sore, scaly, feet that the skin peels off and gets raw, and sometimes can be very painful if not kept moist and treated. I have been to dermatologist twice and tested negative for fungus. Oncologist/Hematologist came to conclusion it is probably the Hydrea causing hand/foot skin problems which other chemo does to some. I do get heartburn with the Hydrea from day 1 but the doctor prescribed an acid reducer. And I drink lots of water to make sure it gets down and does not cause esophageal burning. I have had several nobe marrow biopsies; the first one, to confirm the JAK 2 and the next because of concerns about my severe leg pains being from possible myelofibrosis, to rule it out. I am going into my eighth year with this. Sometimes I forget I am fighting a disease that , if not treated, could cause life threatening problems, but mostly I deal with it daily as I do my other problems. I am a Christian, so my hope is in God, both in life and in death. He strenghtens me day by day. My first husband was a cancer patient at the age of 26 way back in 1976. He passed away at the age of 45, not from the cancer, but from Hep C, which he got from a blood transfusion during cancer treatments, before they screened for it. So, comparitively speaking, this is not as hard to deal with, although the frequent blood draws are making my veins a little shy and squemish. 🙂 I sometimes worry about more blood clots or strokes, but will have to let God help me deal with that.
I am glad we have support groups like this.