20-year Journey of a Patient living with Polycythemia Vera (PV)

Guest: Barbara Abernathy

Presenter: Neal Howard

Guest Bio: When Barbara earned her PhD and began counseling families of young patients with serious illnesses, she never anticipated that she’d face her own serious diagnosis: polycythemia vera (PV). Today, Barbara draws on her own 20+-year journey with cancer to offer a uniquely compassionate perspective to both the families she counsels as executive director of the nonprofit Pediatric Oncology Support Team in West Palm Beach, Florida, as well as the MPN patients who reach out to her for support. Despite the considerable challenges over the years, including diagnoses of myelofibrosis and leukemia and a bone marrow transplant in 2013, Barbara forges on in being a much-admired advocate for the MPN community.

Segment Overview: Barbara lives with a specific type of Myeloproliferative Neoplasms (MPN) called polycythemia vera (PV). She’s here to talk about her 20-year journey with this condition and also tells why she works with Director Cynthia Wade on a documentary about the challenges of living with MPN – Voices of MPN


Neal Howard: Welcome to Health Professional Radio. I’m your host Neal Howard. Thank you so much for joining us today. Our guest is Barbara Abernathy. She’s a patient living with MPN. MPN is Myeloproliferative Neoplasms and she’s living with a specific type. It’s called polycythemia vera. She’s going to talk with us about her 20-year journey with this condition and also why she worked with director Cynthia Wade on a documentary about the challenges of living with MPN. Welcome to Health Professional Radio, Barbara. How are you?

Barbara Abernathy: Thank you. Thank you I’m excellent. Thank you.

N: I know I gave our listeners a little bit of a background about yourself. Tell us who Barbara Abernathy is? What do you do and where do you like to do it?

B: I live in Florida and I run a charity that is a support program helping children with cancer. That’s what I do and where I do it. I also live with myeloproliferative disease which is a rare blood cancer.

N: Were you doing this with children with cancer when you were diagnosed? How did that come about? Were you fine one day and the next day you knew you had something?

B: It was a little bit of a process getting diagnosed and that seems to be the case for people with these rare blood cancers is that the process of getting diagnosed can take a long time because the symptoms are so vague like headache and fatigue and dizziness and bone pain, that sometimes they’re not really diagnosed right away and it can be a kind of a frustrating experience for patients. That’s how it was for me but that was back in 1996. It inspired me to sort of craft my work differently as a mental health counselor and began working with children with cancer two years later.

N: Was there something that doctors repeatedly said that you had and repeatedly they were wrong or was there a multitude of misdiagnosis? You’ve been dealing with this for 20-plus years.

B: Well doctors just said, ‘Well you know, it’s just a fact of modern life that people are just tired. Everybody says they’re tired. You just need to eat better, get more sleep.”, and I said, “No, no. I know that there’s something wrong.”, and I just kept pushing until I got the doctors to run the blood test and that’s when they were able to diagnose me.

N: Left untreated, what could potentially happen and how are you managing today?

B: Great question. This Myeloproliferative diseases are actually a cluster of blood cancers including polycythemia vera which I initially had. Myelofibrosis which was my most recent diagnosis and they’re progressive. They’re chronic and progressive and that means that over time if left untreated, it’s life-threatening. It’s a good thing that I was able to get with good doctors and get good treatment and ultimately I had a bone marrow transplant.

N: Is a bone marrow transplant something that everyone living with MPNs at one point or another is going to have to undertake?

B: No, not necessarily. Some people are able to live with their blood cancer for years and years and years and then possibly die from something else, at a much older age. But if it’s a more aggressive kind of MPN then sometimes the bone marrow transplant is the direct course of action. It’s a tough call. It’s just people have to just work with their doctors to really come up with the best plan for them.

N: I understand that you were featured in a documentary film. You worked with some director, Cynthia Wade about the challenges of living with this condition. Talk about how this film has impacted you.

B: It was a very exciting experience because I was able to tell my story and to begin to create awareness around this group of rare blood cancers. And hopefully my story will resonate with other patients dealing with MPNs and they’ll begin to tell their stories and maybe the disease rare blood cancers won’t be so invincible anymore. When I was diagnosed for example, I didn’t know what it was. I never heard of polycythemia vera and when I went home and told my family and friends they’ve never heard of it. It was difficult and confusing to get support and find information. We really want to get the awareness out there so that the 200,000 people in America dealing with myeloproliferative neoplasms have some place to turn and some resources to go to for education and support. Which is why I’m so proud to have been a part of this film and be able to tell my story with all this ups and downs and struggles. Eventually get to that place of hope that we can bring people to and say, “Yes. You’re dealing with something that’s difficult and you know, you maybe can’t do everything that you used to be able to do and you maybe can’t do things that other people take for granted. But you don’t need to be defined by your disease and you can live with this and you can live through it.”

N: It is important to raise awareness because being a rare such a rare disease, awareness sometimes is low as well as funding for a research into new and better treatments. Even in research to try and develop some type of cure or preventative on it on a DNA level. Am I correct in that?

B: Yes. It’s so important to raise that awareness, to bring more attention to it, so that we can have these better conversations and lead to better treatments, absolutely.

N: Where can we go and view this film?

B: The film is up right now on voicesofmpn.com and you can see the whole film and Cynthia did such a beautiful job with it. It’s very inspiring and it’s my story, but I feel like that there’s thousands of other individuals living with these cancers that have their own story and that we need to be able to share our stories. So that people can be inspired and take an active role in managing their own care. Getting that education so that they can have those conversations with their family and their doctor.

N: As far as family members, does this movie delve into how family members are impacted, having never heard of this or having now understanding it and dealing with a family member who’s living with it?

B: My story does not, because I live in Florida and my family is all in Alabama. My friends literally became my family and had to really step up and help me but my story is just one for that Cynthia is going to be doing. There are other stories that are going to be talking about the importance of that, the importance of family members because they’re so essential in our journey. We have to have those support people around us to keep us hopeful and to keep us going and just give us the emotional and physical support that we need.

N: It’s been a pleasure talking with you today, Barbara. I’m hoping that you’ll give us some updates and especially when some more developments about the film come out and if another film is made, we also want to learn about that as well. But I appreciate you coming in today.

B: Absolutely. Thank you so much Neal.

N: You’ve been listening to Health Professional Radio. I’m your host Neal Howard. Transcripts and audio of the program are available at healthprofessionalradio.com.au and also at hpr.fm.

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