Finola Hughes, who has appeared on the long-running soap opera General Hospital for more than 30 years, recently received an unusual diagnosis — but it wasn’t for her; it was for her character, Anna Devane.
The diagnosis was for a rare blood cancer called polycythemia vera, which is part of a group of rare blood cancers known as myeloproliferative neoplasms.
Hughes said that the writers wanted to give her character a chronic progressive disease that she could continue to live with, and they could address her decisions regarding potential treatment in future storylines. Also, PV isn’t something that has received a lot of publicity, so it also effectively raises awareness of the condition.
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In order to prepare for the role, Hughes met with a woman with PV, which she said personally affected her.
“I asked to meet with somebody who had it and was introduced to a really inspiriting patient who was diagnosed with it,” Hughes told SheKnows. “She came to my house and we talked — what her day-to-day living is like, what her symptoms are like. This was so I could attempt to understand the condition. It’s a responsibility when you’re given a storyline like this, and I wanted to find out how best to portray this chronic condition now.”
But Hughes wants to do more than raise awareness with her portrayal of a character with PV — she wants to make those who have this and other rare conditions feel less alone.
“When you are diagnosed with a rare blood cancer or any rare disease, it can be very isolating,” she explained. “You may not know anyone else who was ever diagnosed with it. If you can’t or don’t find anyone else being treated, you can feel alone and that there’s no one to share it with. I do feel there’s a lot to be said about connecting with other patients who have been diagnosed.”
Dr. Ellen K. Ritchie, assistant professor of medicine and a member of the leukemia program at the Weill Cornell Medical College of Cornell University and the New York Presbyterian Hospital in New York City, told SheKnows that PV actually occurs slightly more in men, but women who have this disease really have a challenge in trying to manage all the of symptoms, especially women in reproductive age.
“They have special challenges because treatments can interfere with the timing of pregnancy and the ability to take a pregnancy to term,” Richie said. “Also, women are diagnosed at a younger age. Because the symptoms are relatively common and benign — including headaches, dizziness, night sweats — patients are sometimes slow to go forward and seeing a primary care physician.”
Through her character, Hughes learned that the symptoms of PV can be easily passed off as something common, like dizziness or a migraine headache.
“As women, we’re more likely if we’re managing a home or a job at the same time, we’re more likely to poo-poo these symptoms we have,” Hughes said. “And actually, that’s what my character does. I keep getting these headaches. Women are very likely to do that and not to check with a health care worker.”
While PV is typically found in older patients, children and younger adults could also contract it, Ritchie explained. Between 150,000 and 200,000 people in the United States have PV. With these disorders (including other MPNs), your body makes too many blood cells, and the earliest threat is developing a blood clot, Richie said.
For anyone looking to learn more about rare blood diseases like PV, Ritchie recommends visiting VoicesofMPN.com. If you are diagnosed with any MPNs, she recommends seeking out a specialist who treats a lot of patients with blood disorders and coming up with a care plan to best suit your unique needs.