Latest / Cyrus Webb's tracks / Dr. Alexander Kim and Pete discuss Indolent Systemic Mastocytosis (ISM)

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Dr. Alexander Kim and Pete discuss Indolent Systemic Mastocytosis (ISM) · Cyrus Webb's tracks

• 0:00
  Speaker 1: Hello, everyone, and welcome back to Conversations Live. I'm your host,
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  Speaker 1: Cyrus Webb. Glad you all could join us once again.
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  Speaker 1: For our radio audience tuning in in Mississippi, WYAD 94.1
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  Speaker 1: FM and WYADonline.com, we're glad that you all can be
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  Speaker 1: with us. Also, join us online worldwide via our podcast
• 0:14
  Speaker 1: at iHeartRadio and Amazon Music. We're glad you all could
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  Speaker 1: be with us as well. This is part of our
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  Speaker 1: Newsies and News segment here at WYAD, and today we're
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  Speaker 1: talking about a hidden impact of a rare disease. Most
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  Speaker 1: of us don't think twice about changes in temperature, certain
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  Speaker 1: foods or fragrances. But for people living with indolent systemic mastocytosis,
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  Speaker 1: or ISM, these everyday exposures can trigger symptoms that may
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  Speaker 1: affect daily life. ISM is a rare disease that can
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  Speaker 1: cause a range of often unpredictable and potentially debilitating symptoms,
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  Speaker 1: such as skin rashes, fatigue, bone pain, stomach issues, and more. Today,
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  Speaker 1: we're excited to welcome Dr. Alexander Kim to our broadcast.
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  Speaker 1: He's an allergist and also Pete, who is living with ISM.
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  Speaker 1: They're going to share with you information about the disease,
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  Speaker 1: its impact, but also a treatment option as well. Thanks
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  Speaker 1: to the two of you for stopping by. Really appreciate it.
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  Speaker 2: Thank you for having us, Cyrus. Really appreciate this opportunity.
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  Speaker 1: Oh, look, I appreciate the opportunity to talk with you
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  Speaker 1: and to share this with our audience.
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  Speaker 2: Dr.
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  Speaker 1: Kim, I want to begin with you because... This may
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  Speaker 1: be something new for our audience. I know it was
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  Speaker 1: for me. What exactly is ISM and how does it
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  Speaker 1: impact those who are affected by it?
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  Speaker 2: Well, thank you again. And Pete and I are very
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  Speaker 2: happy to be here to talk about ISM. So what
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  Speaker 2: is ISM? So ISM stands for, as you mentioned, indolent
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  Speaker 2: systemic mastocytosis. And it is a chronic and rare disease
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  Speaker 2: that affects a buildup, really, of this abnormal immune cell
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  Speaker 2: called the mast cell. And it becomes overreactive. And when
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  Speaker 2: it does, and since it's everywhere in different parts of
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  Speaker 2: the body, symptoms can vary significantly from person to person.
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  Speaker 2: But in my experience, the symptoms that people can experience
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  Speaker 2: with ISM can be things like bone pain. They can
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  Speaker 2: be abdominal pain and skin spots. And we'll hear some
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  Speaker 2: of what Pete has to say about this as well.
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  Speaker 2: But although everyone's experience can be different, One thing shared
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  Speaker 2: amongst many patients is the impact it can have on
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  Speaker 2: their daily lives. And we are working together, Pete and myself,
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  Speaker 2: with Blueprint Medicines to raise awareness of ISM, to raise
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  Speaker 2: awareness of getting diagnosed early and also advances in treatment.
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  Speaker 2: But most importantly, the burden it has on patients like
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  Speaker 2: Pete and also their families.
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  Speaker 1: And Pete, again, I'm so glad you could join us today.
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  Speaker 1: Can you tell us about your own journey with ISM?
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  Speaker 1: Sure thing, Cyrus.
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  Speaker 3: I first started experiencing my symptoms years before I was diagnosed. Primarily,
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  Speaker 3: my problems were like hives. I had spots that would
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  Speaker 3: show up afterwards all over my skin, stomach issues. They
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  Speaker 3: were triggered seemingly at random. They wouldn't happen kind of
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  Speaker 3: at the same time, so it was really hard to
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  Speaker 3: nail down what was going on. And over time... the
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  Speaker 3: symptoms in the cells even worsened more and more. And
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  Speaker 3: so I started having to limit my activities quite a bit.
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  Speaker 3: I would like to say my bubble kind of collapsed,
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  Speaker 3: and it got to a point where there were days
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  Speaker 3: where I wouldn't even leave home just because of how
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  Speaker 3: I felt. This really went on for years until a
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  Speaker 3: chance diagnosis for me, essentially. I was at a dermatologist's office,
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  Speaker 3: and he saw one of the spots on my skin
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  Speaker 3: and biopsied it. and that came back positive for mastocytosis.
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  Speaker 3: So he sent me to an allergist and a hematologist,
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  Speaker 3: and then with a few more tests about a month
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  Speaker 3: or so later, I had a formal ISM diagnosis. You know,
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  Speaker 3: I was great at that time to have a name
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  Speaker 3: put on it. There wasn't a lot of information out
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  Speaker 3: there at the time, so my wife and I had
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  Speaker 3: a lot of questions and a lot of anxiety about
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  Speaker 3: what might be coming in the future.
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  Speaker 1: Thank you for that, Pete.
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  Speaker 2: Dr.
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  Speaker 1: Kim, I want to ask you, before we talk about
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  Speaker 1: treatment options, Is there an age that this typically shows up?
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  Speaker 2: That's a great question. It can affect individuals at many
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  Speaker 2: different ages, and adults particularly, those living with skin spots.
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  Speaker 2: We do tend to think and be more concerned as
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  Speaker 2: one ages and the skin spots remain. A lot of
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  Speaker 2: patients don't realize those skin spots, just as Pia has mentioned,
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  Speaker 2: are part of a broader systemic disease, and it's important,
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  Speaker 2: as Pia has done, is to go seek care with
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  Speaker 2: specialists in terms of their care, such as the dermatologist.
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  Speaker 1: That we saw. Well, as he mentioned about how he
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  Speaker 1: was actually diagnosed, Dr. Kim, what should people living with
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  Speaker 1: ISM know about treatment options?
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  Speaker 2: Great question. I think it's important to recognize that they're
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  Speaker 2: not alone in their journey to treatment, and there have
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  Speaker 2: been many closings of the gap, if you will, as
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  Speaker 2: to how we can address treatment. the gap that was
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  Speaker 2: there in terms of options for treatment. Thankfully, Advanced Therapeutics
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  Speaker 2: Avakit is an FDA-approved medication to help adults with ISM
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  Speaker 2: get symptom improvement. Historically, we've actually managed the symptoms individually,
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  Speaker 2: but with new medications, we have then been able to
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  Speaker 2: overall address symptoms altogether and symptoms such as abdominal pain, fatigue,
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  Speaker 2: and skin spots all have been shown to be reduced
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  Speaker 2: by the medication. Everyone's experience is different, and it's important
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  Speaker 2: for listeners out there to realize that there are side
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  Speaker 2: effects that we should be aware of. It should not
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  Speaker 2: be used in patients with low platelet counts. There are
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  Speaker 2: some serious side effects, such as cognitive effects, effects in
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  Speaker 2: pregnancy and the unborn baby. But the most common side
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  Speaker 2: effects are swelling around the eyes, the arms and legs,
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  Speaker 2: as well as dizziness and flushing.
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  Speaker 1: Pete, what about today? How are you feeling today after
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  Speaker 1: you were able to be diagnosed and find a treatment option?
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  Speaker 3: I'm feeling great today. When I first got diagnosed, like
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  Speaker 3: I said, there wasn't a lot out there. So I
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  Speaker 3: had to research a lot and I worked with my
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  Speaker 3: doctors to really build up a treatment plan for myself.
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  Speaker 3: And eventually over the course of that, Avakit became available
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  Speaker 3: and we added it to my treatment plan. So I
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  Speaker 3: started taking it a few years ago now. And I
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  Speaker 3: You know, over time, I started experiencing fewer and fewer symptoms.
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  Speaker 3: So like the spots on my skin, they started to fade.
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  Speaker 3: I have fewer stomach troubles than I used to. And
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  Speaker 3: so it's really allowed me to kind of get back
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  Speaker 3: to doing the things that I love to do, like
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  Speaker 3: riding my bike, tabling at Comic-Cons with my youngest daughter,
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  Speaker 3: or traveling new places with my wife.
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  Speaker 1: Love that. And so I think, you know, for our audience, then, Dr. Kim,
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  Speaker 1: who may be just learning about ISM or maybe they
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  Speaker 1: know someone that's impacted, they want to know, of course,
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  Speaker 1: about more information, as Pete mentioned, which is a really
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  Speaker 1: good point. At his time, there wasn't a lot out there,
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  Speaker 1: but where can our audience go for more information about
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  Speaker 1: what we've talked about here?
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  Speaker 2: Yeah, it's great that there have been advances in so
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  Speaker 2: many aspects, and one of them is information, of course,
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  Speaker 2: and to have care teams now established, multi-specialists that are
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  Speaker 2: now more aware of the disease, thanks to opportunities like this,
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  Speaker 2: for example. A great resource for listeners out there would
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  Speaker 2: be avacate.com, excellent for patients and people who think they
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  Speaker 2: may actually have some symptoms consistent with ISM.
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  Speaker 1: And we'll make sure that we link that up as well. Again, everyone, Dr. Alexander, Kim,
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  Speaker 1: and Pete have been our guests. Talk with us about ISM,
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  Speaker 1: what you need to know, of course, about this important
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  Speaker 1: treatment option and also more information. Thanks to the two
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  Speaker 1: of you again for being with us. Really appreciate it.
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  Speaker 1: Looking forward to having you back on the program again.
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  Speaker 3: Excellent. Thank you so much.
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  Speaker 2: Thank you, Cyrus.
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  Speaker 1: And more than welcome. And we thank your audience for
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  Speaker 1: tuning in to another great segment of Conversations Live. Again,
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  Speaker 1: part of our music and youth segment here at WYAD.
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  Speaker 1: Until next time, I'm your host, Cyrus. As always, enjoy
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  Speaker 1: your day, enjoy your life, enjoy your world. Thank you
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  Speaker 1: for being with us here at Conversations Live. Let us
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  Speaker 1: go make today amazing. Take care.