I was diagnosed with ET (CALR mutation) and acquired Von Willebrand Syndrome in July of this year. After a routine wellness apt with my primary care doctor, my platelets were almost 2900. I had no idea what it even meant. After all the tests and bone marrow biopsy came the first diagnosis of ET. In retrospect, I was having symptoms but didn't make any connections...weird bruising, nose bleeds, tingling and numbness in my hands, swelling in my lower legs, headaches, etc. After my bone marrow biopsy bled for two days at the site. Not just slightly but continual bleeding and non stop. A trip to the ER was told to apply continual pressure. The next day, still the same continual bleeding. Went back to the ER (it was the weekend and we don't have an urgent care) and finally they sutured it closed. This all didn't make sense. I was given a diagnosis that was supposed to cause clotting, why am I bleeding so much??? Two weeks later I had to have a bc implant removed. The same issue, excessive bleeding and needed sutures to stop it. More testing and it turns out that I have acquired Von Willebrand Syndrome as well. WHAT? A clotting disorder with an excessive bleeding disorder made no sense. I lack a protein that allows my blood to clot. SOOO counter intuitive. Fast forward to 5 months later and I've been on Hydrea for 4 months now. Starting with 500mg, then 1000mg and now at 1500mg plus iron supplement to combat the caused anemia. My platelets are down to 1000 now but probably won't go any lower with meds because my wbc have dropped too low. It's a weird dance now to keep all my numbers in check. We're not quite there yet. I have a great doctor that I am confident with but it has taken a lot of patience. Blood draws every two weeks for the forseable future and trying to stay away from anything where I might injure myself. Hydrea does cause a lot of fatigue and my GI tract is definitely not happy but I guess it's a small price to pay for keeping my numbers (close to being) in check. Two rare chronic cards (cancer??) but fortunately neither were passed on to my kids since one is a mutation and one is acquired. Staying positive and appreciating all the good in life 🙂