Understanding POTS with Dr. Diana Driscoll
PodcastDX
This Week on PodcastDX: Understanding POTS with Dr. Diana Driscoll This week we are honored to welcome none other than Dr. Diana Driscoll, a world-renowned authority on the autonomic nervous system. An optometrist and Fellow of the American Academy of Optometry (FAAO), Dr. Driscoll is internationally recognized for her groundbreaking research on Postural Orthostatic Tachycardia Syndrome (POTS) and other conditions once thought to be “invisible.” Dr. Driscoll has dedicated her career to improving the lives of those affected by autonomic disorders. Her journey began as a patient...
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Spinal Muscular Atrophy SMA with Gyzele Brown
PodcastDX
Gyzele Brown is a proud native of Greenville, MS, now residing in Cleveland, MS. She is the owner and operator of Gyzele’s Salon and Spa, where she’s dedicated to not only transforming looks but also impacting lives through her work. A graduate of Delta State University and Goshen Cosmetology School, Gyzele’s journey began with a background in speech and hearing science — yet her passion for hair and beauty took center stage. Beyond her career, Gyzele is a proud mother of three amazing children who all have spinal muscular atrophy, a rare genetic disease. Her journey...
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The Trifecta: EDS, POTs & MCAS
PodcastDX
What do we mean when we see the word "Trifecta" ? In Horse Racing you would be talking about a bet where you must pick the first, second, and third-place horses in the precise order they finish. In skincare, "The Trifecta" can refer to a set of three essential skincare products that work together for visible results, like a cleanser, serum, and moisturizer. But in this show where we discuss healthcare conditions, "" refers to the three specific diseases which are often found to occur together. For today's show that means EDS, (Ehlers Danlos Syndrome) POTs (Postural...
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Friedreich's Ataxia with Alexia Baker
PodcastDX
This week we talk with Alexis, 25, was diagnosed with Friedreich ataxia (FA) five years ago and since then, has been using her voice and social media platforms to raise awareness for the rare disease. Alexis recently started a foundation, whose goal is to raise money to provide new walkers and wheelchairs for those in need. She currently lives in Tennessee, loves fashion and is currently planning a wedding to her fiancée. Friedreich's ataxia is a rare, inherited disease. It damages the spinal cord, peripheral nerves, and the cerebellum part of the brain. It also leads to heart...
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Hemiplegic Migraine
PodcastDX
Migraine can present in a variety of ways. Hemiplegic migraine is a rare form of migraine where people experience weakness on one side of their body (hemiplegia) in addition to the migraine headache attack. The weakness is a form of migraine aura and occurs with other forms of typical migraine aura like changes in vision, speech or sensation. Our guest on today's show is Amber is a Registered Nurse turned blogger and patient advocate for those with chronic illnesses. Amber Blackburn is a Registered Nurse turned blogger and patient advocate for those with chronic...
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Dangers in the Beauty Industry
PodcastDX
This week we discuss dangers in the beauty industry. From a client's perspective, the issues might not be as severe, but the clinicians who must deal with chemicals day in and day out are at a greater risk. The average woman uses 12 different beauty products every day — cleansers, conditioners, hair dyes, fragrances, skin care products, scented lotions, nail polish, and makeup, to name a few. Take a quick glance at the labels, and you'll see a cocktail of chemical components. You might assume that all these ingredients have been tested to ensure that they're safe for long-term...
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Elderly Fade
PodcastDX
This week's episode has the cohosts talking about social isolation and earlier death among the elderly population. Studies have shown that loneliness is associated with a higher risk of mortality in older adults. For example, one study found that individuals experiencing loneliness at one or more points in time had a higher hazard for mortality compared to those who never experienced loneliness. Loneliness can trigger physiological stress responses, potentially leading to chronic inflammation and reduced immunity. These factors can contribute to the development of...
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Tularemia or Rabbit Fever
PodcastDX
Tularemia is a highly infectious disease you get from the bacterium F. tularensis. You can get it from bug bites, infected animals, contaminated water or food, and particles of bacteria in the air. Tularemia can affect your skin, eyes, throat, lungs and intestines. Tularemia should be treated as soon as possible with antibiotics. We will not have a guest for this week, but would love to invite anyone who has been diagnosed with Tularemia to be a guest on a future show. Tularemia causes your lymph nodes to painfully swell and other symptoms in your lungs, eyes, throat and intestines,...
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Blastomycosis
PodcastDX
Our guest for this week is Sara Olson. Sara (her TikTok name is ) is from the Wolf River area of Wisconsin which just happens to hold the highest concentration of the fungus that causes Blastomycosis. When Sara got Blastomycosis in January 2024, she thought it was 'just the flu'. With a chest xray, she was diagnosed with pneumonia. Several rounds of antibiotics didn't help so she did a CT scan where they found an embolism. Still not knowing anything else, they continued treating her for bacterial pneumonia. They did a swab of her sputum in which her health...
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Cruising to Disaster
PodcastDX
When people ask about getting sick on a cruise ship, they’re often worried about . But what happens if you catch a nasty cold, sprain your ankle, or (even worse) have a serious medical emergency like a heart attack? Rest assured, because cruise ships are well prepared. Are there doctors on cruise ships? Of course! Cruise ships will always have at least one doctor along with a staff of nurses. Larger ships will have more personnel with larger infirmaries. What kind of medications do they have? If you you’re looking for aspirin, seasickness meds or other basic over-the-counter meds, you...
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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 [email protected] 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.