Myelofibrosis? What’s that—how do I spell it? A few years ago, my hematologist said that I likely had this disease but needed a bone marrow biopsy to confirm it. Now, much has changed since that appointment. The bone marrow biopsy did confirm my Primary Myelofibrosis diagnosis and subsequent genetic testing showed I was a CALR (calreticulin) mutant—the best of the worst.
Now I get my blood tested regularly and see my hematologist every six months. There are plenty of abnormalities within my blood but that’s under my skin and to everyone around me I look normal. Without a visible condition, many just can’t understand the emotional impact of having a chronic illness. The watchful waiting is my only “treatment,” which isn’t much of a plan to fight this disease. First and foremost, it is important to find an MPN Specialist. We have a rare condition and most hematologists aren’t aware of the current treatment and/or management procedures. Track your blood numbers—you need to become familiar with YOUR normal. Small changes aren’t typically a concern but you need to inquire with your doctor(s) about significant changes.
Become an informed patient by learning what you can about our illness and common treatments and find a local or virtual support group. Discussion with fellow patients is a key to empowerment. Lastly, I would recommend going to appointments with a trusted friend or family member. There are lots of details to absorb so it’s easy to lose focus on an issue and miss some key points. That second set of ears can be so valuable.
All things considered, I wouldn’t change having an MF diagnosis. Not that I’m happy to have it, but it’s changed who I am and how I live my life. I’m now very aware that my future is more questionable than most, which has given me permission to live my life for today. And this disease has given me a new focus and passion to make things better. Prior to my diagnosis I was ignorant of rare diseases, and now I’m absolutely amazed at what many have accomplished with prognoses far worse than my own. Over the years I’ve become very involved in our disease advocacy—doing what I can while I am able. Then there are all the individuals I’ve met from across Canada and worldwide, several of whom I’ve developed close bonds with. It’s amazing to witness what so many are doing to make life better for all of us. The care and support is always there!
Mark, a person with Myelofibrosis