The Shift in Dementia Care from Control to Connection
PodcastDX
Today we’re continuing our Medicine in Transition theme with a topic that is deeply personal, professionally important, and long overdue. This episode is titled “The Shift of Dementia Care: From Control to Connection.” But we’re not doing this one alone. We’re joined by a special guest, Jennifer Stoner.Jennie is a retired professor from Aurora University in Aurora, Illinois, where she taught in recreation administration and therapeutic recreation, helping train future professionals to design meaningful, person‑centered programs for older adults and...
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Cancer Care in Transition
PodcastDX
In this week’s episode, “Cancer Care in Transition: Precision Medicine, Immunotherapy, and Patient Choice,” we look at how cancer treatment is changing at the exact moment when patients are trying to move from crisis mode into something like a new normal. Precision medicine now uses a person’s genes, tumor markers, and even lifestyle to match them with targeted drugs or immunotherapies instead of one‑size‑fits‑all chemo, while immuno‑oncology has created a growing group of survivors living with long‑term effects and unique follow‑up needs. At the same time, shared...
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The Dark Side of Patient Advocacy on Social Media
PodcastDX
The dark side of advocacy is that the same social media platforms that help health advocates reach millions can also expose them to relentless trolls, coordinated pile‑ons, and even threats to their safety and careers. Studies of physicians and public‑health advocates show that a large share—sometimes more than half—have been personally attacked online for speaking about vaccines, gun violence, or other health issues, facing abuse that targets not just their ideas but also their gender, race, disability, or identity. What starts as “just comments” can quickly escalate into doxxing,...
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Various Types of Dementia
PodcastDX
Various Types of Dementia This week on PodcastDX, we’re stepping into the complex world of dementia—not as a single diagnosis, but as a family of conditions that affect memory, thinking, behavior, and independence in different ways. We’ll introduce the most common types of dementia, including Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal dementia, and mixed dementia, where more than one process—often Alzheimer’s plus vascular changes—are happening in the brain at the same time. We’ll also touch on less common causes, such as dementia related to...
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Rethinking DX: A Digital DSM and the Roots of Mental Health
PodcastDX
“Rethinking DX: A Digital DSM” looks at how the Diagnostic and Statistical Manual of Mental Disorders (DSM) quietly shapes almost every part of mental health care—from who gets a diagnosis and insurance coverage to how people understand their own symptoms and identities. In this conversation, Lita and Jean Marie unpack what the DSM actually is, why the current DSM‑5‑TR matters, and how a future, fully digital “DSM‑6” could function as a living document that updates more quickly, links to decision‑support tools, and better integrates real‑world data from electronic health...
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The Next Decade in Medicine
PodcastDX
Over the next decade, medicine won’t just add new gadgets—it will change what it feels like to be a patient. In this episode of PodcastDX, we explore how AI as a clinical co‑pilot, stem cells and regenerative medicine, genomics and precision care, wearables, and hospital‑at‑home models could reshape everyday care. We talk about the promise of earlier detection and more personalized treatment, the risks around bias, privacy, and hype, and why equity and shared decision‑making must stay at the center as technology races ahead. Most of all, we ask how patients and caregivers can be...
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Patients as Partners: Shared Decision Making in Medicine
PodcastDX
This week we are discussing the rise of a new type of health care where the patients play a vital role in their medical care. Patients as partners in care are at the heart of shared decision making (SDM), a model where clinicians and patients deliberately work together to choose tests and treatments that fit both best evidence and the patient’s values and life context. What shared decision making means SDM is a collaborative process in which clinicians contribute clinical expertise while patients contribute their goals, preferences, and lived experience. Core...
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End of Life in Transition: Earlier Palliative Care, Better Conversations
PodcastDX
At a time when modern medicine is allowing people to enjoy longer, fuller lives, mortality is not always a chief concern. But when a serious illness occurs, the topic becomes unavoidable. This became especially clear during the early days of the COVID-19 pandemic when hospitals were overrun with patients, many with grim prognoses. “The pandemic gave all of us a sense that life can be short and there’s the very real possibility of dying,” says , director of the Palliative Care Program at Yale New Haven Hospital. “It opened the door for us to talk more about death and have a...
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Is Mental Health Care Changing Fast Enough
PodcastDX
This week we discuss the current status of Mental Health Care. Mental health care is changing, but most experts argue it is not changing fast enough relative to the need, especially on access, equity, and workforce. Where change is too slow Unmet need is huge. In the U.S., millions with a diagnosable condition still receive no treatment each year; a recent national report notes that many adults with mental illness remain uninsured or unable to access care. Global workforce shortages. Nearly 50% of the world’s population lives in countries with fewer...
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Rehabilitation Reimagined: Technology, Therapy and Independence
PodcastDX
The integration of Artificial Intelligence (AI) into post-injury rehabilitation is transforming recovery paradigms by enabling personalized, adaptive, and efficient rehabilitation pathways tailored to individual patient needs. This podcast reviews the current advances in AI applications that facilitate assessment, monitoring, and optimization of rehabilitation programs following injuries. Through machine learning algorithms, wearable sensors, and predictive analytics, AI enhances the precision of therapy plans, tracks patient progress in real-time, and predicts recovery trajectories. The...
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Bleeding Disorders, also known as Hemophilia, von Willebrand Disease, Coagulation Disorders, Blood Clotting Disorders, Clotting Factor Deficiencies
Bleeding disorders are rare disorders affecting the way the body controls blood clotting. If your blood does not clot normally, you may experience problems with bleeding too much after an injury or surgery. This health topic will focus on bleeding disorders that are caused by problems with clotting factors, including hemophilia and von Willebrand disease.
Clotting factors, also called coagulation factors, are proteins in the blood that work with small cells, called platelets, to form blood clots. Any problem that affects the function or number of clotting factors or platelets can lead to a bleeding disorder.
A bleeding disorder can be inherited, meaning that you are born with the disorder, or it can be acquired, meaning it develops during your life. Signs and symptoms can include easy bruising, heavy menstrual periods, and nosebleeds that happen often. Your doctor will review your symptoms, risk factors, medical history, and blood test results to diagnose a bleeding disorder.
Your doctor may recommend medicines or clotting factor replacement therapy to treat the bleeding disorder. Some bleeding disorders are lifelong conditions, and some can lead to complications. Even if you do not need medicine to treat the bleeding disorder, your doctor may recommend taking precautions before a medical procedure or during a pregnancy to prevent bleeding problems in the future.
(credits to NIH)
TRANSCRIPT
Lita T 00:07 Hello and welcome to another episode of PodcastDX. The show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis. I'm Lita.
Ron 00:18 I'm Ron
Jean 00:19 and I'm moving to Hawaii.
Lita T 00:21 No, she's not
Jean 00:22 it snowed again last night.
Lita T 00:23 I know but
Ron 00:24 and today
Jean 00:25 and today
Lita T 00:26 still not moving to Hawaii.
Jean 00:27 ohhh moving to Hawaii
Lita T 00:28 Remember when you said you cannot shovel lava?
Jean 00:30 Lava
Lita T 00:31 Okay,
Jean 00:31 this is true.
Lita T 00:32 We're staying here.
Jean 00:33 Okay.
Lita T 00:33 Collectively we're the host of podcast dx. March is bleeding disorders Awareness Month, although bleeding disorders may be acquired. On today's show, we're going to be talking about the most common inherited bleeding disorder, von Willebrand disease,
Jean 00:53 someone with (unitelligable) the blah...blah
Lita T 00:55 What?
Jean 00:56 Someone living with a bleeding disorder has blood, which does not clot properly.
Ron 01:02 When someone is injured and bleeding, a blood clot forms to hopefully...to hopefully stop that person from losing too much blood. This process requires both blood platelets and clotting factors which clump together to form something like a dam to stop the bleeding.
Lita T 01:20 Right? I remember watching Grey's Anatomy.
Ron 01:22 (Chuckle)
Lita T 01:23 Okay, we need more platelets, right?
Jean 01:26 I don't watch Grey's Anatomy...but sure I could see them saying that.
Lita T 01:28 Yeah, cuz you know, somebody is bleeding. They need more platelets!
Jean 01:31 Right
Ron 01:31 That's not scripted.
Lita T 01:33 No, it's not.
Jean 01:33 No.
Lita T 01:35 Someone with a bleeding disorder may notice that they bruise easily bleed; excessively during medical or dental procedures or when cut; have unexplained nosebleeds and bleeding gums and internal bleeding. And when I was on blood thinners...no
Jean 01:54 Here we go...
Lita T 01:54 Right? Wait was I am blood thinners or aspirin? I was either on blood thinners or a baby aspirin at one time. And I was outside gardening. And I grabbed a thorn bush. Right? I was clipping and the thorn punctured something on my wrist. And I'm watching it and it's going: squirt, squirt, squirt, and I'm just watching it. I like Isn't that interesting? As it squirting like a squirt gun every you know it would like with my pulse. Squirt, squirt, squirt. And then finally I said: "Okay, better stop this." So, I put pressure on it to stop it. But um, yeah.
Jean 02:24 We're all surprised she's still here. (Chuckle)
Lita T 02:36 (Boisturious laughter)
Ron 02:36 But you definitely painted a picture.
Lita T 02:38 Yeah. Right. So that's what it would be like, if you have a bleeding disorder.
Jean 02:41 I don't know if that's exactly what it would be like, that sounds like an arterial spray that squirting in very, very dangerous.
Lita T 02:47 Okay, that's a bleeding disorder.
Jean 02:49 Bleeding problem.
Ron 02:50 So
Lita T 02:51 yeah.
Ron 02:52 In addition to obtaining a complete medical history, your healthcare provider may order a complete blood count, a bleeding time test and or a platelet aggregation test to help diagnose your condition.
Jean 03:07 And have you guys ever had a bleeding time test?
Ron 03:10 Me personally? No.
Jean 03:11 Oh, they like cut your, nick, your ear and then stand there and wait to see when it stops bleeding.
Lita T 03:18 (chuckling)
Jean 03:19 That's what I remember.
Lita T 03:19 like watching. paint dry?
Ron 03:20 I don't like your doctor's.
Jean 03:21 Yeah, well, that wasn't my doctor. That was my mom. Oh, no, just kidding. Okay. Um, treatment for bleeding disorders will likely depend on the severity and cause of the specific bleeding disorder an individual has.
Lita T 03:33 Right. And although I had never heard of it before, today, the most commonly inherited bleeding disorder is von Willebrand disease.
Ron 03:45 Well I can say that approximately 1% of the population here in the US are affected by von Villa brain disease. And it's characterized by an insufficient amount of a protein. Ironically, the von Willebrand factor or VFW
Jean 04:03 VWF
Lita T 04:04 The VFW hopefully doesn't. It's causing you to bleed you're going to the wrong VWF
Ron 04:11 Did I say I do glasses. I'm sorry, the von Willebrand factor or v w F, which aids in the clotting,
Lita T 04:18 right? There are three forms of von Willebrand disease.
Jean 04:24 We're gonna say it differently every time you say
Lita T 04:26 Yes, okay. Individuals with type one have less VWF than average and may have associated bleeding issues.
Jean 04:37 Were and those living with type two von Willebrand disease have enough v wF in their system, but their Vidya wF does not function correctly or is incorrectly formed. And
Ron 04:49 type three, v w.f
Jean 04:52 Vwd willen brand disease Oh, tight as opposed to von Willebrand factor. Oh, Okay,
Lita T 05:00 okay. So type three v WD.
Ron 05:03 Okay? So type three v WD is very serious individuals with this form of von Willebrand disease, do not make v w f at all. Oh, yeah, right. And their platelets cannot clot and this is very This is a very serious condition which makes bleeding difficult to control.
Lita T 05:23 That sounds terrible. Individuals with von Willebrand disease should typically avoid taking medications which may increase their risk of bleeding such as aspirin, or non steroidal anti inflammatories.
Jean 05:37 And if you have a bleeding disorder, it is vital that you inform your health care providers, including your doctors and dentists. And I would suggest if you know if it's a very serious form, that you have an ID bracelet that states that
Lita T 05:50 Oh, yeah, for sure. And carry a lot of gauze.
Jean 05:54 I don't get a tourniquet. I don't think you should be able to carry a tourniquet, no band aids. I think people that carry Okay, tourniquets are very serious,
Lita T 06:02 right. Okay. If you would like to know more about bleeding disorder awareness, check out the link to the national hemophilia foundation Foundation's website which will be on our web page, or you may want to donate to a red tie fundraiser.
Jean 06:21 And I think Haemophilia is what we've all associated with writing disorders. That's what I've heard, right? But it's very, very rare. It just gets a lot of publicity, because you hear about, you know, like Royals hat being haemophiliac and or being haemophiliacs because,
Lita T 06:34 you know, that's, that's where it came from.
Jean 06:37 No, it's just inbreeding, and the those, you know, because then you're passing the factor on and you're increasing the chance, or likelihood that two people with the same factor will pass it on. But
Ron 06:47 that's the most common, right. No,
Jean 06:49 no, no, it's not. It's very rare. von Willebrand disease is the most common. Isn't that weird? And we've never heard of that. Yeah, right. That's Yeah, it's very counterintuitive. It is very counterintuitive. But that's what the internet says, and we believe everything on the internet.
Lita T 07:07 And gene would like you to know about a blood parfait recipe in case you wanted to share this with your friends.
Jean 07:17 Well, the National hemophilia foundation does try to utilize different techniques to help people understand more about their blood and clotting. And to help illustrate that, they suggest that you could try to make a blood purvey, you could use a cream colored substance like vanilla ice cream, or maybe a yogurt as your base use Cheerios. And that will represent your platelets, although they're nice and round, which I don't understand. And you kind of want something like awkwardly shaped but red m&ms or red Hots, and those could be the red blood cells, white chocolate chips, or mini marshmallows. And these can be the white blood cells, pretzels. And these can be the fibrin which is the kind of the stuff that joins with platelets to form that your clot, okay. Gummy worms in the eye can actually represent the V WD. And to top it off, put on some rainbow sprinkles, and that'll represent the 13 other blood factors.
Lita T 08:14 Yeah, we'll be doing that.
Ron 08:18 I gotta tell you, I learned quite a bit on this. This morning.
Lita 08:21 Oh well, that's
Jean 08:22 that's good.
Lita T 08:23 Yeah, I'm glad somebody did. Yeah, I
Jean 08:24 learned we're not moving to Hawaii.
Lita T 08:26 No, we're not moving to Hawaii.
Ron 08:28 Well, for our listeners, if you have any questions or comments related to today's show, you can drop us a line at podcast dx@yahoo.com through our website, podcast, dx comm on Facebook pitter pitter pitter patter pitter patter on
Jean 08:47 his own app. Wow. Have you heard from somebody on Twitter? I hear they have a lot of patter.
Ron 08:54 Let's try this again. Okay, through our website, podcast, dx.com on Facebook, Twitter, Pinterest, or Instagram,
Jean 09:02 I can appear as a combination of Twitter and Pinterest. I like it.
Lita T 09:05 Yeah. Okay. And if you have a moment to spare, please give us a review wherever you get your podcast. As always, please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regime. Never disregard professional medical advice or delay of seeking it because of something you have heard on this podcast till next week.