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…
The Other F-Words - a column by Ruth Fein
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…
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…
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…
The good news: We are here, living with — and for many of us, thriving with — a cancer that we are able to manage, though sometimes better than others. The challenging news: No matter how well we might feel and how well our medications might work, myelofibrosis…
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…
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…
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 Google about living with myelofibrosis (MF), a rare chronic blood cancer, much of what you read may be very outdated.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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