Anyone living with Essential Thrombocythemia with JAK2?

I was diagnosed with this mutation and ET last Fall, and started Hydroxyurea as my platelet count was in the mid 700s and climbing. I have stabilized with platelets hanging right at 192 for the last six months and take HU only 4 days a week. I consider this a win!

Hello, lindamarie! Others on this forum have been living with ET with the JAK2 driver for decades.

Diagnosis is SCARY! Especially since this is something you (and maybe even your doctor) had never heard of.

But we are lucky that we have effective treatment options. The JAK2 driver is the most frequent and the most studied form of ET.

We are lucky to have this forum, too. This is a great place to ask questions and benefit from others' experiences.

We're here for you!

I joined the JAK2 club in 2018. I have Polycythemia Vera which is a MPN sister of your ET. I remember my blood doctor telling me I have a genetic mutation of the Janus Kinase gene. (JAK2) I was epecting to get some kind of super hero powers like spiderman but that never happened. I take a 500 mg Hydroxyurea every day which I call "Chemo in a pill." My platelets are under control and I have very few side effects. I do get fatigue in the late afternoon and go to sleep early. Is that just because I am a 65 year old man? Who knows. My advice is to stay active and enjoy every day. From Kentucky, in the heartland of America.

I was diagnosed in June 2022 with ET JAK2. I have been on different doses of Hydroxyurea since that time. Just search ET JAK2 on this website and you will come up with a lot of people with this condition.
Best wishes, Eileen