Finding an MPN Specialist: Aimee’s Story
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).
GET MORE INFORMATION ABOUT SEEING AN MPN SPECIALIST. Hear from an oncology clinical nurse educator with experience in MPNs.