This disease very nearly killed me and it was hell .Less than 3 years ago, I went into "pre death" waiting for the arrangements for my bone marrow transplant to be completed. It came on very, very quickly- I would have been dead within a few months of the diagnosis if not for the JAK2 inhibitors ( thank you!). Please do not underestimate this one.
I was diagnosed in July and started Jakafi in August, what a wonderful drug for Myelofibrosis. I have to be on it for 6 months before I can get my transplant (winter 2024). I’m actually looking forward to it . I know it will be hellish but I’m praying for a full recovery. Donors are already lined up. 🤞🤞🤞
This disease very nearly killed me and it was hell .Less than 3 years ago, I went into "pre death" waiting for the arrangements for my bone marrow transplant to be completed. It came on very, very quickly- I would have been dead within a few months of the diagnosis if not for the JAK2 inhibitors ( thank you!). Please do not underestimate this one.
I was diagnosed in July and started Jakafi in August, what a wonderful drug for Myelofibrosis. I have to be on it for 6 months before I can get my transplant (winter 2024). I’m actually looking forward to it . I know it will be hellish but I’m praying for a full recovery. Donors are already lined up. 🤞🤞🤞
@@Peggybk good luck!
You're in my thoughts and prayers. That goes for all of you that suffer from this awful disease! Stay strong and God bless.❤
I am in the "pre death" part right now. Supposed to have transplant in January 2023. It can't come soon enough. It's becoming more hellish every day
Just got diagnosed with it . What is the life expectancy?
Is this a form of SLE(Lupus)?
Is it an autoimmune condion?
No. It is a myeloproliferative proliferative disorder. A type of leukemia.