As MPN Peoria continues to raise awareness of MPNs, we hope to create a community of support and understanding. We thank our local friend, MPN patient and advocate, Marsha, for sharing her story about what it has been like living with an MPN. We thank you for your compassion and support.
1. How old were you when you were diagnosed with Essential Thrombocythemia, and what treatments did your disease require at that time?
I was 30 years old when I was diagnosed with ET. I decided to participate in a trial drug called Anagrelide.
2. How long ago did your ET convert to Myelofibrosis (MF)?
I converted to MF, Grade 2 in 2016
3. How has MF affected your quality of life, and what symptoms do you have because of your MPN?
Fatigue can be the biggest issue. When I experience this, I listen to my body and rest until I feel better. Symptoms include a sore mouth (not all the time) and inflammation. Exercise, rest, eating healthy food, and prayer play a big part in enhancing my quality of life.
4. What treatment are you currently using for your MF?
I take Hydroxyurea (an anti-cancer drug) and low-dose aspirin.
5. What would you like people to know about MPNs?
MPN Spotlight-June 2021 Marsha Krone
An MPN can feel like a runaway train. You cannot do anything to prevent progression. Since progression is out of my control, I try to learn all I can about new treatments and new development concerning MPN's. I choose to do be my best and leave the rest up to God.
-Marsha, Local MPN Patient
Our primary goal at MPN Peoria is to be able to financially support research for new treatments and ultimately for a cure for these rare blood cancers called MPNs, all the while supporting and empowering those afflicted by the disease.
LEARN MORE: https://www.mpnpeoria.org
REGISTER TO HIKE: https://www.mpnpeoria.org/mpn-peoria-hike-registration
Register Now for the
3rd Annual MPN Peoria Virtual Hike
August 7th - 14th
Hike. Walk. Run. Bike. your favorite place at your on pace.
Every hiker gets us one step closer to a cure.
All registered hikers will also be entered into a drawing for Maui Jim sunglasses.
Submit your hike pictures to us the week of the hike and be entered into the drawing for a YETI cooler.
Share with your friends, family, co-workers to register and
let's all hike to find a cure.
SHOW YOUR STRIPES ON RARE DISEASE DAY
a heartfelt message from Dr. Couri
Hello all. I am prouder than ever to “show my stripes” this year in honor of Rare Disease Day, February 28, 2021. This year marks the second anniversary of the launch of MPN Peoria. Rare Disease Day brings awareness to rare diseases with the ultimate goal being to improve access to treatment and medical advocacy not only for those individuals living with a rare disease but also for their families and caregivers. Upon launching MPN Peoria on February 28, 2019, I shared my story about my own rare disease called MPN or myeloproliferative neoplasm, a rare form of blood cancer.
As many of you may have already known, my disease progressed in 2020, and in order to have a chance at survival, I needed to undergo a stem cell (bone marrow) transplant.
Congrats to the heart and soul of MPN Peoria,
founder Dr. Michele Couri,
for being nationally recognized as an
"CURE® and Incyte Corporation held their eighth annual MPN Heroes® recognition program in early December. In the spirit of fostering community, participants were invited to join the cancer community for an evening of gratitude for the heroes who have made differences in the lives of people with MPNs.
Each MPN Hero is nominated by patients, caregivers, and health care professionals for their heroic contributions in the field of MPN cancer or in the individual lives of people with MPN cancer."
Well deserved honor Dr. Couri! And her nominator Marsha Krone , is a hero as well!
Thank you to all the MPN Peoria supporters, without you none of this is possible!
MPN Heroes, the MPN Heroes logo, Voices of MPN, and the Voices of MPN logo are registered trademarks of Incyte.
© 2020, Incyte Corporation. MAT-HEM-01888 12/20