Raising Public Awareness and Understanding of Polycythemia Vera and Myeloproliferative Neoplasms [Interview] [Transcript]

Dr_Ellen_Ritchie_Finola_Hughes_Polycythemia_Vera_Myeloproliferative_Neoplasms 1

Dr_Ellen_Ritchie_Finola_Hughes_Polycythemia_Vera_Myeloproliferative_NeoplasmsGuest: Dr. Ellen Ritchie and Finola Hughes
Presenter: Neal Howard
Guest Bio: Ellen Ritchie, MD, Associate Professor of Clinical Medicine, Weill Cornell Medical College. Actress Finola Hughes, who plays Anna Devane on the leading daytime soap opera General Hospital.

Segment overview: Segment 3: Rare Disease Day is February 28, and in this segment, Dr. Ellen Ritchie and Finola Hughes, the actress who plays Anna Devane on the leading daytime soap opera General Hospital, discuss the myeloproliferative neoplasms (MPN) awareness campaign and the website, VoicesofMPN.com.

Health Professional Radio – Understanding of Polycythemia Vera and Myeloproliferative Neoplasms

Neal Howard: Hello, and welcome to Health Professional Radio. I’m your host, Neal Howard. Thank you for joining us today on the program. Rare Disease Awareness Day is approaching. It’s February the 28th, Rare Disease Day. Our guest is Dr. Ellen Ritchie, along with Finola Hughes. Now, Dr. Ritchie is associate professor of clinical medicine at Cornell Medical College and Finola Hughes is with us today. She plays Anna Devane on the daytime soap opera, General Hospital. We’re here today to talk about polycythemia vera or PV for short. Welcome to the program, Dr. Ritchie and Finola Hughes.

Dr. Ellen Ritchie: Thank you.

Finola Hughes: Thank you so much for having us.

Neal: Thank you both for coming in today. Rare Disease Awareness Day, February the 28th, how long have you all been involved in Rare Disease Day?

Finola: I’m sure the good doctor here has probably known about it longer than I have. I only found out about it in my character being diagnosed with polycythemia vera or PV. That was the first I heard about Rare Disease Day actually.
Dr. Ritchie: Rare Disease Day is really every day for Dr. Ritchie, because I deal with rare diseases all the time. I’m happy though that there’s finally a glorification of Rare Disease Day by having an actual named day for this particular rare disease.

Neal: It’s a form of blood cancer. I’ve heard of leukemia. How does this differ from leukemia.

Dr. Ritchie: It can be a pre-leukemia. Any cancer really comes from one abnormal cell with a disorder or a mutation in it that arises to comprise the majority of cells in a system so that a cancer like polycythemia vera, there’s one abnormal cell, probably with a JAK2 mutation among others that grows to populate the bone marrow. It wins, so to speak, over normal cells. That’s the same principle that guides the development of almost any cancer, an abnormal cell that grows and takes over the population of normal cells.

Neal: Is PV the only blood cancer of this type?

Dr. Ritchie: There are many other myeloproliferative diseases. PV is one of them. There’s also one called essential thrombocythemia, short for that is ET, or primary myelofibrosis, which is PMF, which can be another prominent myeloproliferative disease. There’s also chronic myeloid leukemia, but that is a separate disease with a different type of medications that are applied to it.

Neal: Finola, you’ve played many, many roles. I’m sure you’ve played a sick person. How did you-

Finola: Actually, I have not. Actually, no.

Neal: Really?

Finola: I haven’t played …

Neal: Okay, well maybe-

Finola: anyone with a disease before.

Neal: Not a disease.

Finola: No.

Neal: Okay, I saw them do one heck of a makeup job on you when you were grieving and running from Carlos. Anyway, that’s-

Finola: I wasn’t sick though. I was haunted. That’s a different thing.

Neal: Haunted, okay. A different thing.

Finola: I was haunted.

Neal: That’s another radio show, right? The haunting. Okay, so you prepared for this role to portray someone with this disease. What did you learn about this disease that you didn’t know about cancer in general?

Finola: Well, I learned everything that I didn’t know before. I really didn’t know anything about this disease before because it is such a rare blood cancer. All the information that I got was from this wonderful, inspiriting woman who had been diagnosed about 10 years ago with polycythemia vera. I learned from her how the symptoms can be masked for a while, how it could take a long time to be diagnosed. I learned how she weathers this every day, living with a chronic disease. I learned how she looked after herself. I learned how the symptoms made her feel. Our writers on the show wrote dialogue to enable me to portray some of these feelings. I hope that we do it justice, because we’re sharing something with an audience. We’re sharing things that people go through. Real people do face this. They face these diagnosis and they face having a rare blood cancer. We don’t want to take that lightly and so all of us, all of our actors, we took this very seriously and we tried to get all the dialogue correct and the words and how people felt in order to be able to portray this and do it justice. It was certainly an eye-opener. I have known people with cancer in my own life, but this is different because this is a rare blood cancer that is chronic, that you live with, that you are treated with for the rest of your life. It did seem different to me in learning about this.
Neal: Dr. Ritchie, from a medical practitioner standpoint, we talked about it taking a very long time. It’s sometimes 10 years before you meet someone having the same condition, misdiagnosed for many years before the proper diagnosis. Are there any misconceptions about this disease that contribute to misdiagnosis?
Dr. Ritchie: I don’t think misconceptions or it’s really lack of awareness so that primary care physician has a lot of things on the plate to be concerned with. Symptoms such a fatigue and headache and dizziness, those are relatively nondescript symptoms that could be ascribed to many other illnesses. It just takes that little bit of extra awareness to decide to do the blood test or to recognize when a blood test is abnormal enough that you should refer a patient onto a hematologist for a more thorough evaluation.

Neal: Now, Finola, you’re working with doctors on the show and other people on the show and you’re working with an actual doctor, Dr. Ellen Ritchie now.

Finola: Yes, it’s lovely. It’s lovely. It’s lovely to listen to Dr. Ritchie talk about this and her knowledge is just extraordinarily, obviously because it’s her specialty, but it’s just inspiring, I have to say.

Neal: Was there any opportunity for you to help some of your fellow actors in working with you? Was there any opportunity for them to do a little bit of research in order to interact with you on the show?

Finola: Well, they all did their own separate research and they each had their own different role to play in this. There were two doctors on the show and one actually plays a hematologist I believe or something like that. The other one is related to me in some way. Then my daughter on the show is in fact a doctor. They all had to do their own research and certainly, they had to go and practice saying polycythemia vera and myeloproliferative neoplasm. They had to go off in corners and say those words because those don’t roll trippingly off the tongue. We’re given the scripts in advance and especially our executive producer will pull us aside if we’re going to have a story like this and he’ll bring you into his office and he’ll talk about it, so everybody had a heads up about what they were facing and how seriously we were all taking this. We do lots of things on our show. We have big adventures and we have lots of hiking and fun, but then when it comes to social issues and to things that are really relevant to people’s personal lives, then we go on a different route and we really do take this seriously. Everybody gets their words learned and understand the significance of a story like this. Yeah, so they each did their own research and we did a lot of work together and running lines. I think nearly all of my cast mates were sent to the website, voicesofmpn.com, to find out things there, so they could understand just in talking to somebody, in giving them the news that actually they have a rare blood cancer and how you might go about that, what your bedside manner would be like as a doctor. That’s why we have directors and why we have executive produces, so that we can try to do the best job we possibly can.
Neal: Where can our listeners go and get more information and what’s the one thing – either one of you can answer this question – that you would like to have our listeners do on February the 28th in order to get the word out about PV?

Finola: I think you can go to voicesofmpn.com to find out about resources and useful information. What would you say people should do on February the 28th, doctor?

Dr. Ritchie: Well, I think we always have to appreciate our health, particularly on Rare Disease Day. If you are feeling perfect and you are healthy, you should celebrate that on that day, as well as reaching out to people that you may know who are suffering with some sort of illness and letting them know that you are a partner there to be helpful.

Finola: Also, if you go to Voices of MPN Facebook too, you’ll find the community there full of people that are wanting to talk to you about this. I have to say that since this story rolled out yesterday on our show, I’ve had a lot of people reach out to me on Twitter saying that a family members was diagnosed with PV or they themselves lives with PV, and they’d never seen it mentioned before, so go to the voicesofmpn.com or go to their Facebook and maybe you’ll be able to reach out to somebody. Let’s all tell each other that we’re not alone with whatever we’re facing in our lives.

Neal: Great, great. Well, it’s been a pleasure talking with both of you, Dr. Ellen Ritchie and Finola Hughes. Thank you both for coming in today.

Finola: Thank you.

Dr. Ritchie: Thank you.

Neal: You’ve been listening to Health Professional Radio. I’m your host, Neal Howard, in studio with Dr. Ellen Ritchie, associate professor of clinical medicine at Cornell Medical College, and actress Finola Hughes, who plays Anna Devane on the leading daytime soap, General Hospital. Transcripts and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm. You can subscribe to this podcast on iTunes and listen in and download on SoundCloud.

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