Hello. I was diagnosed with ET, CAL-R back in July. It was discovered in a routine CBC to check my cholesterol. My platelet count was off the charts...2800. All the blood tests, bone marrow biopsies, etc. combined with other symptoms and more tests discovered aVWD (Acquired Von Willebrand Disease) as well. Another RARE card to draw. Counter intuitively, I am not at risk for clotting but just the opposite. Strange to think I was diagnosed with a disorder that causes clotting issues yet I am at risk for bleeding out. I am also taking Hydrea (1500mg daily and I weigh 105 pounds) which has lowered my platelets below 1000 but probably won't reach normal range because my wbc have dropped as well. We still haven't quite found the right balance of meds but hopefully soon. Blood draws every two weeks. Fortunately my aVWD is actually acquired vs. genetic and I didn't pass along to my kids. Still not feeling lucky with two rare conditions. I have yet to meet someone with ET and aVWD. Exercise does help...clears my head and gives me a sense of control in a world where I don't have control parts of my own health. Two chronic disorders with lifelong chemo drugs. Always trying to stay positive even when I question how and why.

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