(One day early Today is MPN Awareness Day. A time to spread awareness. Hope, inspiration and passion in living are just a few of our allies. In honor of our community, I want to re-share (Sept. 2019) a very inspiring story from Leona, who subscribed to the PV Reporter newsletter back in 2013 and remains an active subscribe /reader in 2021.
She shared the following note with me:
I have lived with PV for a very long time (almost 25 years), long before there was much information for patients, except I discovered Dr. X long before she became a recognized authority. I was blessed to know her and I believe she prolonged my life by using Interferon early in the course of the illness. (I will be 87 next month) She also stressed patient to patient interaction, being proactive in dealing with the illness, and learning, learning learning.
I am personally excited to know that you are affording the MPN Community an additional source of knowledge. Thank you for your dedication and a Healthy New Year.
As a follow up just last week (Sept 2019): I reached out to her, thanking her for her support and VERY pleased to report "she is doing well for a gal approaching 90 and living with PV for 27 years! She also added - "the information I have gleaned from the various support groups and online information has truly made the journey possible. I also believe that I, myself have contributed to my good fortune with a healthy diet, exercise, a proactive approach, and using an integrative medical regimen." There are many positive takeaways here, but the biggest one for me is: PV (MPNs in general) do not always progress and you CAN LIVE A NORMAL lifespan! Thank you Leona for allowing me to share your words of wisdom on our special day, bless you!
Cheers,
David
PVReporter.com