Staying [ACT]IVATED: My Journey with Myelofibrosis and the Power of Proactive Care
As an avid climber who made healthy choices, Jason never envisioned he would be diagnosed with myelofibrosis (MF). Watch as he shares his path to diagnosis, challenges with finding a good fit for an MF specialist, and advice for optimal care.
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Transcript:
Being informed and proactive is crucial in managing myelofibrosis, a relatively unknown blood cancer. My name is Jason, and I was diagnosed with myelofibrosis at age 46. Being an avid climber and overall a healthy person, the news came as a huge shock. Now, with my experience, I want to share my story to help others who might be experiencing unusual symptoms, just as I did. My desire is to raise awareness and to stress the importance of early detection, ultimately aiming to improve outcomes for all those affected by myelofibrosis.
Even though I didn’t realize it at the time, my myelofibrosis symptoms began with fatigue and abdominal pain. I dismissed the symptoms and didn’t see my doctor until I noticed that my skin had become strangely itchy. My doctor ran a full blood panel and referred me to an academic cancer center. I was fortunate that I lived in the same city, but it made me think about what would have happened if I lived in a rural area. I received further testing followed by my diagnosis of myelofibrosis.
I was referred to a doctor who specializes in treating myeloproliferative neoplasms (MPNs). I met with the doctor but wasn’t sure that she was going to be the best fit for me. I’m a naturally curious person, and she didn’t seem open to answering a lot of my questions. After connecting with some other myelofibrosis patients in an online support group, I decided to meet with another specialist to see if I could find a better match for my care. I was fortunate to find a good match with the next MPN specialist. I’ve been under his care since, which started with active surveillance followed by an autologous stem cell transplant. My transplant was incredibly challenging, but my myelofibrosis support group was always there for me with words of support and taking action to support both my wife and me during my treatment journey.
Following my experience with myelofibrosis, I’ve become dedicated to educating others about its unique symptoms to raise awareness of this type of blood cancer. Like me, you can empower yourself by connecting with patient advocates and support groups that can assist you in navigating your healthcare journey.
Stay [ACT]IVATED in your myelofibrosis care with these tips:
- Ask your care team questions to learn about the status of your treatment options, and what to expect during and after treatment.
- Join a patient support group to offer and to receive emotional support. This was a saving grace for me and my family.
These actions for me were key to staying [ACT]IVATED in my myelofibrosis care.
