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Diagnosis: Getting Support by Learning About MPNs

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Published on November 5, 2019

During this Partners program highlight, Patient Power host and advocate Beth Probert talks with expert Lindsey Lyle about a myeloproliferative neoplasm (MPN) patient’s initial diagnosis and how to best get educated based on individual levels of knowledge. Patient Power Co-Founder and care partner Esther Schorr also shares how continuous learning and sharing with others can create a stronger support system. Watch now to learn MPN expert advice.

The Partners series is sponsored by Incyte Corporation. This organization has no editorial control. It is produced solely by Patient Power.

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You're a FANTASTIC resource and I share info with groups online, open up conversations with my oncologist and GP and send links to my adult children to help them understand. You guys are earth Angels.

— Annie, from UK, online MPN meeting attendee

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Transcript |

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Beth Probert:               

How do we educate others about this disease?

Lindsey Lyle:                

Sure. So as far as educating patients, you know, when they’re first diagnosed, I think that as you said, Beth, it hits really hard, and it’s often unexpected. You know, kind of maybe patients have had symptoms that are kind of unexplained for a long period of time, or it’s just kind of on routine lab work, there’s some abnormality. And then out of the blue, you have a diagnosis of chronic illness and dealing with this.

So in my first visit with patients, I really focus on educating them about the disease itself and, you know, each patient kind of wants a little bit of a different thing. Some patients come in with a ton of knowledge because they’ve already done a lot of research, and some patients come in with really not a lot of background information.

And so in talking about the symptoms that are related to an MPN and how to deal with those symptoms, you know, we really kind of take things one by one and focus in on what is exactly affecting that specific patient and how it’s interfering with their normal everyday activities.

And so the first many, many times and actually continues is a lot of education because especially at the first visit, things can be very overwhelming. And so just kind of repeating yourself is excellent, and a good way that I really find that I’m able to actually communicate with my patients is by continually answering questions and going back to things that we may have already discussed.

So I think really kind of understanding what specifically the symptoms are that are challenging the patient to live a life that they desire to live, that’s where we kinda generally start, and then we kind of go from there.

Beth Probert:               

Wow. And the key point that I keep hearing you say over and over again, it’s not just you go once and learn about it and you’re finished. It is a process. I believe you mentioned there’s a lot of steps in educating, so it’s not just one time, but encouraging patients to keep coming back with questions.

Lindsey Lyle:                

Correct. Correct. 

Beth Probert:               

I think that’s wonderful. And Esther, as a caregiver, I know you’re doing a lot of educating because you’re the core of the family. There’s kiddos, there’s now grandchildren, there’s different members of your family. And you know, your business associates you and Andrew deal with. Do you find that you’re constantly educating people? 

Esther Schorr:              

Yeah, and I find that through educating myself, and of course Andrew just happens to be somebody who’s over-educated, I think, on everything. It’s really important for me as a care partner to sometimes deflect some of the questions by being able to answer questions from family and friends. You know, it’s, “How’s Andrew doing? Does he need more treatment? What’s gonna happen next?”

And we’ve both of us have found that by being educated and sharing information with people who care rather than kinda keeping it to ourselves, there’s a symbiotic thing that goes on. When we know other people who care about us, care about him, understand what’s going on, they’re able to better support. And so yeah, it’s kind of this circle of get everybody to understand, and then they know how to support.

Beth Probert:               

I think that’s so key in our well-being, when we have this disease, and to be able to depend on our caregiver to coordinate that is really, really key.

Esther Schorr:              

It can feel a bit burdensome, Beth. I mean, for me it hasn’t felt burdensome, because it’s part of my daily life, because I work on educating patients. But I want to acknowledge that for any caregiver or somebody who’s affected, they’re not only having to educate themselves, but they also have to confront their own insecurities or concerns about what’s going on for their loved one. And through education, educating themselves, they can feel a little calmer and feel more in control.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.