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Be Your Own Advocate

Alisa R., Community Voice Champion

Author: Alisa R., Community Voice Champion

Alisa is a real patient who was diagnosed with polycythemia vera.

I became an advocate without even knowing it. At the time, I did not know what an advocate was and did not realize what an impact it would make on my journey.

I was diagnosed with a myeloproliferative neoplasm (MPN) more than 20 years ago. I was 16 at the time. It’s hard to explain what it feels like to be diagnosed with a rare disease, especially at a young age. For me, it was terrifying to say the least.

I was initially diagnosed with essential thrombocythemia. I was told that there was no treatment available to me because I was young. After several complications, the doctor did a bone marrow biopsy and correctly diagnosed me with polycythemia vera (PV). Again, I was told that there was nothing they could do for me because I was young. I trusted this information because it was delivered by a hematologist. Why should I not trust my doctor?

Several years of this happened before one day I finally had enough. I had my first heart attack and was told they still did not want to do anything. This is the moment when I became an advocate without knowing it. I realized that this was my life and there had to be a better option. I started doing research on the internet and trying to do everything I could to educate myself about PV. I found a doctor that was an MPN expert and this probably saved my life. By becoming informed and educated, I was able to participate in the decisions being made about my life. To me, being an advocate is learning how to speak up for yourself. I am now part of my healthcare team. I make informed decisions about my healthcare, and I’m an advocate for myself and my journey.

Now, I try to advocate for myself and for other MPN patients at every opportunity that I get. I’ve become involved in social media to connect with other patients and patient advocates. Social media is also a great way to bring awareness to MPNs. I have made connections with companies involved in the MPN community and rare diseases. I’ve become involved locally by starting my own team for Light the Night walks for the Leukemia and Lymphoma Society and by connecting with other local patients. I’m constantly trying to keep up with current information from reputable sources. Being educated empowers me. It gives me my voice to help bring awareness and to advocate for MPNs.

As an MPN patient, it’s important to ask questions, become educated, and get involved so that you know you are receiving the best treatment possible. Remember that you are part of your healthcare team and you are your own best advocate!

Alisa has overcome a number of challenges related to her PV diagnosis. Watch as she shares her experience and advice for people newly diagnosed with PV.


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