Starting a nonprofit after a frightening diagnosis leads to research and awareness.
by Dr. Michele Couri, Couri Center for Gynecology and Integrative Women’s Health
In 2010, I was diagnosed with Myeloproliferative Neoplasms (MPNs), a group of rare, chronic blood cancers in which one’s bone marrow does not function properly—and for which there is no cure. Bone marrow is where many different types of blood cells are made, including white and red blood cells and platelets. People with MPNs suffer from an abnormal overproduction of blood cells, which can “thicken” the blood and lead to a host of complications.
For several months, I had experienced symptoms of visual changes (a jagged, bright light in my right eye), weight loss, headaches, and a burning sensation in my fingers and toes. After blood work showed a markedly elevated platelet count and hematocrit, I had a complete workup and evaluation at Mayo Clinic. A bone marrow biopsy confirmed my diagnosis.
Living with MPNs MPNs increase the risk of cardiovascular disease, such as heart attacks, strokes and blood clots. They are also progressive diseases, typically worsening over time. MPNs may progress to a more advanced disease, such as acute leukemia, and can be associated with significantly decreased quality of life, psychological stress (depression and anxiety), as well as premature death.
Treatment options revolve around maintaining normal blood counts through therapeutic phlebotomy (removing excess blood), blood transfusions (replacing blood cells depleted by treatment or the disease itself), chemotherapy, immunotherapy, targeted therapy, other medications and stem cell transplants. Several patients with MPNs are involved in clinical trials.
During my nine-year journey, I have met some incredible people who have helped me navigate the disease. We have formed deep friendships and shared in both the successes and heartaches. Unfortunately, I have watched as some of them have lost their battle with MPNs.
I am blessed to feel good overall. I truly believe in the power of a positive attitude, and I do not let my MPNs define me. I have a strong faith in God and the most amazing support system imaginable with my family, friends and employees. I am grateful to my physicians and healthcare team, who work selflessly on my behalf.
And I remain optimistic that a cure will be found someday. That day may not be in my lifetime, but I am grateful to all who have dedicated their lives to studying this disease and working toward finding more treatment options.
Starting MPN Peoria Since my diagnosis, I have remained private about it—never wanting it to take away from my commitment and dedication to helping and healing others. But in January 2018, I lost my mentor, Robert Rosen, to complications from his MPNs.
Bob’s death was both heartbreaking and unacceptable to me. He had the best doctors in the world, yet still died before his time. After his passing, I felt a calling to do more for those afflicted with MPNs, so I started MPN Peoria, a 501(c)(3) nonprofit organization. The majority of funds raised will be donated to the MPN Research Foundation, started by Bob after he was diagnosed in 1997, and used to research more treatments and ultimately, a cure.
Since starting MPN Peoria, I have met other area patients at various stages of the disease. Connecting with them has made me even more determined to help. Together, we are stronger. PM
Michele A. Couri, MD, FACOG, ABIHM is a board-certified obstetrician/gynecologist and medical director at the Couri Center for Gynecology and Integrative Women’s Health.