When Getting It Right Matters Most — My Experience Portraying a PV Patient On Screen

After having played Anna Devane on General Hospital for over 30 years, you’d think I’d seen it all. From being a former spy of the World Security Bureau and being appointed police chief of Port Charles, to her own daughter’s kidnapping, Anna sure has had her fair share of drama and struggles! Nonetheless, I have always felt that she was ready for what was coming at her. My character’s newest challenge, however, isn’t something she could have trained or prepared for: being diagnosed with polycythemia vera, a rare blood cancer.

I have to be honest, until a few months ago, I had never heard of the condition, let alone knew how to pronounce it. PV, for short, is one in a group of rare blood cancers known as MPNs — or myeloproliferative neoplasms. In addition to PV, which is the most common type, MPNs also include myelofibrosis (MF) and essential thrombocythemia (ET). They’re rare: these MPNs combined only affect about 200,000 people in the U.S. MPN symptoms, such as fatigue, headaches and dizziness, may not sound like typical cancer symptoms, but these cancers progressively worsen over time and can significantly impact the lives of patients and their caregivers.

When the producers told me they had chosen my character to bring such an important topic to the show, I wanted to make sure that I could get it right. So, as I was preparing to play a patient on screen, I was fortunate to have the chance to sit down with real-life PV patient Linda. She told me firsthand about her diagnosis and the everyday struggles and frustrations of living with a rare disease. In fact, patients with rare diseases often face a long and frustrating road to diagnosis and difficulties accessing the resources and support they need to cope with their disease. The most important piece of information I took away from my one-on-one with Linda is how crucial it is to advocate for your care and talk to your healthcare team about treatment and support options to manage the disease.

In highlighting PV on General Hospital, I am hoping to not only give a voice to this patient community, but also to let them know that they are not alone and that there are resources they can turn to. With Rare Disease Day right around the corner, this is the perfect time to shed light on this little-known disease that has a tremendous impact on the patients who live with it day to day.

I am thankful to be able to use my voice on and off the set of General Hospital to help spread awareness and understanding of PV and all MPNs. It was an honor to learn about the patient experience from Linda and gain a small glimpse into the life of a PV patient as I prepared for my role. As Anna’s story on General Hospital continues, so will her PV, and I will have to keep in mind how this chronic and progressive disease can affect everyday aspects of her life. I hope that she can serve as an inspiration to other patients, and I hope that my efforts help patients know they are not alone. Helpful information and resources are available to guide patients and their families as they work with their physicians to manage their condition.

If you want to learn more, check out www.VoicesofMPN.com visit Voices of MPN on Facebook, and don’t forget to tune in to watch General Hospital this week to follow Anna’s PV journey.

This blog was developed through a partnership with Incyte Corporation.

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