Health Educator Turned MPN Patient Speaks to Importance of Specialized Care

Health Educator Turned MPN Patient Speaks to Importance of Specialized Care from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) patient and health educator Julia Olff helped others navigate the healthcare system before her diagnosis with myelofibrosis and later with ET. Watch as she shares her unique experience and how finding MPN specialists can help patients in receiving optimal care.  

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Julia Olff:

Well, as a health educator and as a former hospital administrator when I was diagnosed with myelofibrosis, I feel like I had a particular reaction to the diagnosis that might be different from others who didn’t work in healthcare. I was both fascinated, which may sound really bizarre, that I was being diagnosed with an illness that I did not feel. Also, an illness I had not heard of, although I knew about some of the treatments that might be proposed because of my work as a health educator. So, I feel like I kind of went into health educator mode and health navigator mode, and that gave me a leg up in terms of knowing very early on, that once my ET transformed to myelofibrosis, I knew that I needed to see an MPN expert. And because I worked on health education because I worked in hospitals, I understood that I want, I needed to see a physician who had a depth of expertise, who had a volume of patients, who had a lot of experience with the drugs that existed. Although, in 2008, there was no approved, drug for myelofibrosis, but I knew I needed to go to the place where there was…

Where I had a better chance of getting the latest treatment, and I was diagnosed by a community oncologist who was lovely and one of the nicest people, and one of the nicest physicians I’ve seen, but it was clear he was not steeped in MPNs, because he treated patients across a spectrum of cancers. So, in that way, I think I started out in a different place, I also know that hospitals and healthcare can be very overwhelming, and I had a bit of the language and the world and some of the sort of…I understood a little bit more, I think about what my physicians might have been sharing with me, and if I didn’t, I felt empowered and not that this is easy by any stretch and it continues to be a challenge, but I knew that I needed to ask questions. I knew that I needed to read more about my illness, I knew I needed to vet my doctor as well, and I also figured out over time that as I was going to have this illness, hopefully in the sense that I hope I continue to live well with myelofibrosis and stay alive, that I was going to be seeing an MPN expert for a long time.

So, I think that influenced my point of view, I kind of take it as a job, so as to my personality, so I have a health notebook, I need to have one from the very beginning, I knew I couldn’t remember everything, I had to write it down. I knew I had to track what I was feeling so I could share it with my doctor, and I knew that from being a health educator, I think no one told me to do those things, and certainly, physicians don’t really know to tell you that, so I think in a lot of ways, I was approaching my illness in a very serious manner because I had experience in healthcare, and the last comment I’ll make is, I think from navigating the system, navigating health insurance, I knew a little bit from my experience as a caregiver already, and also from a health educator, I understood this is another area where I needed to empower myself or ask questions, or not take some of the information that may have been shared with me initially as on face value, that it was okay to ask more. As I said, I’ve had this illness for 13 years, I’ve also been caregiving for an adult child with illness, and every time I call the insurance company to ask a question about an explanation of benefits or why something isn’t covered, and learn a tiny bit more, and I add that to sort of my toolkit. 

My MPN Journey, Getting the Best Care After ET and MF Diagnoses

My MPN Journey, Getting the Best Care After ET and MF Diagnoses from Patient Empowerment Network on Vimeo.

Myelofibrosis and essential thrombocythemia (ET) patient Julia had experience as a health educator and hospital administrator before receiving her MPN diagnosis. Watch as she shares how she later connected the dots from her symptoms and blood work, lessons learned about myelofibrosis patient journeys, and her advice for living well with MPNs.

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My name is Julia, I was diagnosed with essential Thrombocythemia in 2007, and then with myelofibrosis a year later, after a routine blood work. The diagnosis came out of nowhere. I was healthy and active prior to my diagnosis and raising five children with my husband. I’ll never forget the day I received a voicemail from my primary care doctor’s office, I really couldn’t believe what I was hearing. I didn’t have time for this illness in my life. I had a bone marrow biopsy that showed I was positive for JAK2 and had a 5q deletion genetic mutation. I started on daily aspirin, and it was a hard pill to swallow for many reasons.

As a certified health educator and former hospital administrator, I understood the importance of treating a rare disease, but I had a difficult time with the idea of taking medicine daily, and I felt like I didn’t have any symptoms. I reviewed my old lab print-outs that showed elevated platelets 15 years before, that slowly increased over time. I recall having severe migraines that would put me out of commission for the day, and tenacious fatigue in the years before, I didn’t connect the dots with the symptoms, and neither did my oncologist. By 2007, my platelets and white blood cells were very high.

I decided to find an expert with extensive experience with ET and MF to get top-notch monitoring and treatment. I connected with a specialist for many years and hope to keep living with my disease for many years ahead. I’ve had several hospitalizations and ER visits over the years, but keep on going. MF has absolutely changed the path of my life and how I live it, but I still do most of what I want to do while I’ve been lucky in maintaining stable myelofibrosis with no true signs of disease progression or serious myelofibrosis complications, it’s important to understand the path for other myelofibrosis patients might be quite different.

My advice for others MPN patients is:

  • Pay attention to how you feel and pace yourself
  • Keep track of your blood counts, so you can alert your care team
  • Find an MPN specialist for your care
  • Don’t forget to be present and spend time with your family.

These actions are key to staying on your path to empowerment

Tips for Traveling During COVID with a Blood Disorder

Tips for Traveling During COVID with a Blood Disorder from Patient Empowerment Network on Vimeo.

PEN MPN network managers Summer and Jeff take us on the road for their annual camping trip in the Julian forest in Southern California. What are some of the challenges of traveling with a blood disorder?

Both share tips on how to make the best of traveling during COVID.

“Planning is key when you are traveling during COVID.”

The Importance of Finding a Myeloproliferative Neoplasm (MPN) Specialist

The Importance of Finding a Myeloproliferative Neoplasm (MPN) Specialist from Patient Empowerment Network on Vimeo.

How can MPN patients find a specialist? Patient Empowerment Network MPN managers Summer and Jeff share how they met their myelofibrosis specialist, Dr. Tiffany Tanaka, who gave them confidence about their path to empowerment.

Listen as Summer and Jeff share specific valuable tips for connecting to the best resources.

Newly Diagnosed with an MPN? Start Here.

Newly Diagnosed with an MPN? Start Here. from Patient Empowerment Network on Vimeo.

If you’ve been diagnosed with an MPN, such as essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis (MF), Dr. Ruben Mesa outlines key steps you should take, including a visit with an MPN specialist.

Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas. More about this expert here.

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Dr. Ruben Mesa:

Patients who have a Myeloproliferative Neoplasm should consider seeing an MPN specialist at least at some frequency. The myeloproliferative neoplasms are not common illnesses. They’re not exceedingly rare, but they’re not common. And there is many nuances in terms of how we best diagnose the disease; the discussion we have with you regarding what are the treatment plans and goals, and then putting that plan into effect.

So, frequently, there’s a value in seeing someone who focuses on MPNs to help to establish that plan, and then frequently, there is a home physician, hematologist, or medical oncologist that works together along with the specialist in terms of managing the patient.

When patients first come for their visits related to an MPN, they have many questions. You know, they’re not common diseases, and people typically don’t have much experience with them. They’ve not had a family member that’s afflicted or someone at work. So, frequently, it comes on out of the blue. People will frequently, sometimes, go online and get a lot of information, but sometimes too much information; information that may or many not be appropriate for them.

So, there are many questions that are valuable, and I always advise patients to write down their questions ahead of time because sometimes in the heat of the moment, having a conversation, particularly with a new physician or provider, those questions may not, necessarily, be top of mind for them. So, we can go through those questions clearly.

I think key questions, I wouldn’t limit it to one key question, but I’d say I would put them in categories. 1.) Truly understanding the diagnosis; what’s the actual diagnosis that that patient has. 2.) What does the physician think are the risks that patient has? With each of the diseases, there are different risk classifications, and that will also help to give patients a frame of reference if they read other information about their disease online from highly reputable sources, or other educational sort of materials.

To understand, what is the recommended treatment plan. The plan may or may not included medications and understand what those medications are intended to do, and what their side effects may be, or what to anticipate.

It may or may not include aspirin, it may or may not include phlebotomy, or it may or may not include other therapies. So, understanding that diagnosis, understanding the risk, and understanding, what is the recommendation in terms of treatment.