Persistence in believing in yourself.
It has been a long ten years. Ten years feeling like they were stolen only to realize that they were actually wrapped in persistence. That persistence is what has kept me alive and well. As well as someone with MPN-U can live.
Hi Erin, Sorry for such a late response. Thank you for asking these questions and there are no stupid questions. 😉
Overall, my health is ok. I have found a great doctor is a specialist in MPN's and is taking very good care of me. He has put me on Jakafi to deal with my symptoms which I've been on for almost three years. That is what has made the biggest difference in this journey. I feel extremely confident with his abilities. Being confident in your care is SO important.
Do you have an MPN-U, also? I hope you are confident in your care too!
Best regards,
Ruth(Ruth), thanks for the update and please don't feel like you have to apologize here! We all have busy lives and I totally understand if answering comments on a website aren't your topmost priority! I am glad your health is okay and that you have a great doctor working with your to keep you as healthy as possible. That's awesome! Short of having a cure for your condition, having a doctor who listens and is proactive is worth their weight in gold, in my opinion.
And I am glad Jakafi is bringing you some positive results. I, myself, to do not have an MPN-U, but thank you for asking.
I hope you have a happy and relatively healthy 2026!
Best, Erin, Team Member.
I am so glad you hung in there and persisted,
! Pardon what may seem like a stupid question, considering your diagnosis, but how is your health, overall? I know you mentioned doing well, considering your MPN-U, but are you able to find doctors that have some knowledge about your rare disease? Are there treatment options that help you stay as healthy as possible?
Best, Erin, Team Member.
