I’m 38 today and was diagnosed with ET at age 21 while in college in 2007, following a routine blood test. I took the blood test so that I could donate bone marrow to earn money ($400 at the time) for an upcoming study abroad trip. Apart from the increased platelet count, I did not have other noticeable symptoms. The blood test results indicated an increased platelet count, and I was not permitted to donate bone marrow. I underwent a bone marrow biopsy many months later, which confirmed the diagnosis of ET. I am JAK2+.Between that time period in college and today, I’ve been on and off hydroxyurea, on and off baby aspirin, got married, had two children, learned more about bleeding and other symptoms related to high platelet counts and have met new members of the MPN community. I wish I knew then how much hormone levels and clotting issues can impact women’s reproductive health. Interestingly, I learned after my son was born that I also carry the gene for hemophilia A, an incurable bleeding disorder. Call me if you’d like to talk about both clotting or bleeding!These days, I do occasionally experience incredible fatigue and frequently find myself scratching itchy skin (particularly after the shower) and have noticed some vision changes but am not sure if that can be attributed to ET. Today, I’m so grateful for the knowledge I’ve gained and the support available to me in the MPN community, especially MPN Advocacy and Education International.
Thanks for sharing your story. I too started with an ET diagnosis (2005) and have progressed to secondary MF (2009), on Rux & thankfully stable for now.
I remember the terrible itching with ET after showering; try using a cream with menthol, (keep it cold in the fridge 🙂 for extra help). You could also see if UVB treatment is an option. Both helped me, thankfully Rux is keeping a lid on the itch now .
Best wishes for you future.