I have given a great deal of thought as to what I want to accomplish by participating in this hike. My main goal is to help the MPN Research Foundation to create a greater awareness and understanding of MPNs to anyone in reach. With greater awareness comes early detection. With early detection comes effective management of some of the awful side effects of these conditions. With effective management comes a much greater quality of life!

Being diagnosed with an incurable blood cancer is not the news anybody wants to hear. I was no different. I was not at all familiar with MPNs and had never heard of myelofibrosis (MF). Once I became educated about this disease, it became apparent that the bone pain, fatigue, itching, shortness of breath, elevated platelets, anemia and violent leg and foot muscle contractions I had been experiencing over the course of 13 years were early signs of an MPN. Up until Feb. 24, 2022, my disease had not been properly medically managed. I started to question myself. Am I going crazy?

I have a very high threshold for pain but this was different. The week before Christmas in 2021, my symptoms had become so severe that I was admitted into the hospital. Every test you could imagine was performed. In the end, I was treated for regional complex pain syndrome. I was hooked up to a morphine drip, given percocet, tramadol, ibuprofen and steroids – none of which helped. No one believed that this pain was due to my MF. I was discharged and sought additional care.

I learned about Dr. Aaron Gerds, of the Cleveland Clinic, and a clinical trial that he was doing by way of the MPN Research Foundation. We made an appointment; I underwent multiple tests; and, thankfully, I met the criteria for this clinical trial. I continue to participate in it to this day.My journey began on Feb. 24, 2022, and since that date my symptoms have reduced significantly! I am not cured but my quality of life has improved dramatically.

My takeaway message is this. If you have any of these symptoms or know someone who does, seek out a specialists right away and get a proper diagnosis as soon as possible. I thank EVERYONE for their support! I especially want to thank the MPN Research Foundation for their tireless efforts toward education and research. I also have to give a shout out to Patient Power who also provides valuable information and support to the MPN community.