The Other F-Words – Ruth Fein

Ruth has spent 40 years as a health and science writer at a variety of publications, and wrote “The Big C2: stories from the chronic side of cancer.” She’s lived with a myeloproliferative neoplasm for more than 30 years and is in a myelofibrosis clinical trial. Ruth is a global patient advocate and a patient representative on the MPN Clinical Guidelines Panel for the National Comprehensive Cancer Network.

Talking about MF’s effects can be a gift to friends and loved ones

Living with a rare disease brings unique challenges. Myelofibrosis (MF) is no exception. What puts MF in a category unfamiliar to many — newly diagnosed patients, family, and friends alike — is the second “C” in its “Big C” label. MF is a chronic cancer. What this means is…

Seeking out the joy to be found in the simplest of things

We each get our inspiration from our own (sometimes) fleeting moments. Tonight, I listened to a brilliant live concert by world-class musician friends. And the beauty of it? I didn’t even have to be there. I enjoyed every second, livestreamed straight to my breezy back porch. When it comes to…

Other F-words we encounter in life with myelofibrosis, Part 2

Last in a series. Read part one.  In the first part of this series, I wrote about “the other F-words” we deal with as we go through life, whether we’re living with a rare blood cancer like myelofibrosis (MF) or other chronic health conditions. The truth is, the…

Other F-words we encounter in life with myelofibrosis, Part 1

First in a series. I’ve been thinking about “the other F-words” we deal with in life, whether we’re living with a rare blood cancer like myelofibrosis or any chronic condition. And truthfully, the same words often challenge us in our careers, family life, and day-to-day interactions with others. In…

A weeklong trek abroad exemplifies how I’m living my best life

A few months ago, I walked 100 kilometers in northwestern Spain. That’s about 60 miles. It was the final trek of the legendary Camino de Santiago trail that starts in Sarria and ends in Santiago de Compostela. It was a magnificent adventure for the eyes and spirit — offering stunning…

How to manage expectations about advances in myelofibrosis treatment

Getting your head around myelofibrosis (MF) is tricky. It can look and feel different at different times and can vary greatly among people who live with its symptoms and potential complications. If you’re feeling uneasy that you don’t fully comprehend everything about your own disease, rest assured, you are…

Sharing my fact-based hope about myelofibrosis treatment

Let’s start with the good news: If you ask Dr. Google about living with myelofibrosis (MF), a rare chronic blood cancer, much of what you read may be very outdated. That includes alarming old data about life expectancy and quality of life. To get the real story about what…


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