Finding an MPN Specialist: Aimee’s Story

Author: Voices of MPN

In October 2013, Aimee was diagnosed with polycythemia vera. She had been going to doctors since 2008, which was frustrating to her, because she had been experiencing symptoms for a long time. Unfortunately, because she didn’t have a diagnosis, she didn't know how to manage those symptoms.

Aimee had been passed around from doctor to doctor, trying to figure out what was going on. She saw a variety of Healthcare Professionals, including a rheumatologist, a neurologist, a gastroenterologist and her general practitioner. She felt that while they were managing her symptoms, no one could tell her what was happening with her body.

She was diagnosed with PV after almost six years, finally getting the answer to what had been going on for so many years. While the hematologist that diagnosed her was very knowledgeable about her condition, Aimee still felt that she needed someone to help her find out what was causing everything. That didn’t happen until she started seeing an MPN specialist. After doing an online search for an MPN specialist in her area, she identified the specialist herself.

Seeking out a Healthcare Professional experienced in treating MPNs may provide you with access to different medical resources and facilities. He or she may also offer more detailed information about your condition.

Seeing a specialist really turned things around for her, enabling her to finally get the detailed information about her condition that she had been searching for. In fact, her MPN specialist sat down with paper and pencil and drew a diagram of how everything worked within her blood and bone marrow.


Some reasons to consider seeing an MPN specialist might be:

  • You want another opinion about your diagnosis or care management plan
  • You want to explore specialized care management options
  • Your current Healthcare Professional has limited experience with your condition and can partner with the MPN specialist

Aimee knows how important it is to be her own advocate and would advise other people with PV to do the same. That’s because if she hadn’t taken an active role in her own PV journey she might still be undiagnosed today. She believes that with their in-depth knowledge of MPNs, a specialist can be pivotal in the diagnosis and ongoing management of the condition. Thanks to Aimee’s MPN specialist, she now feels more in control of her MPN journey because she finally knows what’s going on with her body.

Learn about the turning point in Aimee’s journey with polycythemia vera (PV).

VIEW TRANSCRIPT

My name is Aimee…

(onscreen text) Aimee was diagnosed with polycythemia vera… or PV

I was diagnosed in October 2013 with polycythemia vera.

It was a long journey.

(onscreen text) This is her PV State of Mine…

I had been going to doctors since 2008…

(onscreen text) …or where she is on her journey with PV.

It was very frustrating because I had symptoms. But because I had no diagnosis, I didn't know how to treat the symptoms.

(onscreen text) Establishing her diagnosis took almost six years.

And I had been…passed around from doctor to doctor…specialist to specialist trying to figure out what was going on.

… I was seeing a rheumatologist… I saw my general practitioner…I saw a neurologist…I saw a gastroenterologist.

All of these people were treating symptoms.

… But nobody told me what was happening with my body.

(onscreen text) Aimee wanted more information about her condition.

When I was diagnosed with PV after almost six years,

I finally had an answer to what had been going on for so many years.

I felt, okay maybe I’m not crazy after all…

…maybe what’s going on with my body is a real thing.

…I had finally figured out what was causing all of these symptoms.

…But then also the, okay what next.

My hematologist that diagnosed me was very knowledgeable…but…

I needed someone to find out what was causing everything.

(onscreen text) She needed a physician that specializes in MPNs*.

*Myeloproliferative Neoplasms

That didn’t happen until I started seeing a specialist

…the pivotal point for me…was when I became my own advocate…

(onscreen text) It was time to take matters into her own hands.

I found the specialist myself...

I went online and put in the information for an MPN specialist in this area.

(onscreen text) It was a turning point in her journey with PV.

…seeing a specialist is really what turned this around for me.

… he sat down with a notebook, paper and pencil and did a diagram of how your bone marrow works, how your blood works, how everything works.

…when I have more knowledge about something, I feel more comfortable.

…I always ask questions. I have a list when I go in. So he knows that it's gonna be... he's gonna have to spend a little time with me.

…I have a lot of information that I track from time to time…

… I've gotten to where I keep a diary with where my numbers are, my last visit, and how I'm feeling that month… to see if there’s any correlation.

(onscreen text) It’s important to regularly evaluate your PV and understand your condition…

(onscreen text) …and to be aware of how PV affects your daily life.

…My MPN specialist…charts the numbers as well. So it’s…a concerted effort.

One of the first things I would tell someone who is newly diagnosed with PV, is to be your own advocate.

…it was very important for me…because…

…if I had just kept going from doctor to doctor, I may still be…undiagnosed and thinking I’m losing my mind.

…it wasn’t until I became my own advocate and started…looking into what was going on and…looked into finding my own specialist, that things really started to come together for me.

(onscreen text) Take an active role in your health.

A specialist is going to be pivotal in your recovery and your maintenance of the disease…

…and they are so much more knowledgeable about…what causes it…

…I’m in control more…

…because I know what’s going on with my body.

That didn’t happen until I started seeing a specialist

(onscreen text) Talk to your Healthcare Professional about where you are on your journey with PV.

…it changed everything.

(onscreen text) Understand your PV State of Mine.

(onscreen text) Get free resources to help you talk to your Healthcare Professional about polycythemia vera. Register now at www.PVStateOfMine.com.

(onscreen text) You can also join the VoicesofMPN community. Visit VoicesofMPN on Facebook, Pinterest and YouTube.

(onscreen text) This video is sponsored by Incyte Corporation.

(onscreen text) Voices of MPN is a trademark of Incyte Corporation.

(onscreen text) © 2015, Incyte Corporation. All rights reserved. UPM-1057 11/15

GET MORE INFORMATION ABOUT SEEING AN MPN SPECIALIST. Hear from an oncology clinical nurse educator with experience in MPNs.

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