loader from loading.io

Bleeding Disorders

PodcastDX

Release Date: 03/23/2021

Sarcoidosis show art Sarcoidosis

PodcastDX

In this episode we will discuss Sarcoidosis with Frank Rivera. Frank is the Founder and President of   is a WEGO Health Patient Leader, a Patient Ambassador at Illumina Inc, and a volunteer Patient Ambassador at The Foundation for Sarcoidosis Research. ​Sarcoidosis is a disease characterized by the growth of tiny collections of inflammatory cells (granulomas) in any part of your body — most commonly the lungs and lymph nodes. But it can also affect the eyes, skin, heart and other organs. The cause of sarcoidosis is unknown, but experts think it results from the body's immune system...

info_outline
Organ Donation show art Organ Donation

PodcastDX

Every day, gifts from donors restore health to save and improve lives. As of 2019, 165 million people in the U.S. have registered as donors, but we all need to sign up. There are still      men, women, and children waiting for a life-saving organ transplant.   ​Organ donation takes healthy organs and tissues from one person for  into another. Experts say that the organs from one donor can save or help as many as 50 people. Organs you can donate include Internal organs: Kidneys, heart, liver, pancreas, intestines, lungs Skin Bone and bone marrow Cornea ...

info_outline
Tinnitus show art Tinnitus

PodcastDX

Do you hear a constant sound in your ears, even though there is no external source linked to the noise? If so, you’re likely suffering from tinnitus, and you aren’t alone. It’s estimated that more than 50 million Americans suffer from some degree of tinnitus, 16 million Americans experience such severe ringing that they require some type of treatment, and another 2 million suffer from such debilitating tinnitus that it impacts their daily lives. ​ Tinnitus is marked by phantom-like ringing, roaring, hissing, buzzing, or clicking noise; in other words, the sound can be heard, yet...

info_outline
von Hippel-Lindau Chuvash Polycythemia show art von Hippel-Lindau Chuvash Polycythemia

PodcastDX

Our guest this week is Shannon Wyatt.  Shannon has an extremely rare condition called von Hippel-Lindau Chuvash Polycythemia (we will abbreviate to VHL).  Her only symptom that led to finding VHL was that she was diagnosed with kidney cancer at 34 years old, that didn’t even have any noticeable symptoms, it was just an incidental finding on an MRI, but when they took it out, they found it was malignant. A few years later, it was pulmonary embolisms in both lungs after a routine gallbladder removal that pointed to Chuvash Polycythemia after many previous labs had raised suspicion of...

info_outline
Bleeding Disorders show art Bleeding Disorders

PodcastDX

  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...

info_outline
Trisomy show art Trisomy

PodcastDX

Trisomy is an abnormality in which an organism has the wrong number of chromosomes. In humans, a normal baby will have 46 chromosomes in 23 pairs, with each parent contributing 23 chromosomes. When trisomy occurs, the individual is born with three instances of a particular chromosome instead of the usual two, resulting in 47 total chromosomes instead of 46. The results of this extra data can vary, but tend to manifest in the form of birth defects, some of which can be quite severe. The most common cause of trisomy is a problem in the duplication of chromosomes to create egg and sperm cells....

info_outline
Lysosomal Storage Disease show art Lysosomal Storage Disease

PodcastDX

Lauren, is here speaking with us today about Lysosomal Storage Disease.  Lauren has four siblings whom she loves dearly, and graduated in 2011.  She worked at a community center until COVID put a hold on social gatherings. She considers herself a social person and is grateful for the chance to get her story out into the world. ​ Lysosomal storage diseases are inherited metabolic diseases that are characterized by an abnormal build-up of various toxic materials in the body's cells as a result of enzyme deficiencies. There are nearly 50 of these disorders altogether, and they may...

info_outline
Muscular Dystrophy show art Muscular Dystrophy

PodcastDX

This week we are speaking with a Muscular Dystrophy Warrior!   Keisha Greaves is a motivational speaker, the founder of Girls Chronically Rock, and the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Girls Chronically Rock (www. girlschronicallyrock.com) offers inspired fashion celebrating Muscular Dystrophy and other chronic illnesses. Over the past few years, Keisha has been featured in Good Morning America, Today Show, WCVB Chronicle, ABC News, Thrive Global, Politico, Improper Bostonian, Boston Voyager, Herself 360, Liz on Biz, among other outlets on and...

info_outline
Rare Disease CAMK-2 Gene show art Rare Disease CAMK-2 Gene

PodcastDX

Our guest today is Karen is a wife and mother to 5 children.  Her youngest, who is now 13 was born seemingly healthy.  In her first weeks it became clear that she wasn't developing normally. After 10 years of looking for a diagnosis and not finding answers, they decided to do whole exome sequencing.  That finally gave them an answer.  She has a mutation of her CAMK2 gene. It was so newly discovered that only a handful of people were diagnosed with this.  Since it has been discovered, more children are being found to be in the family of CAMK2 mutations.  It is so...

info_outline
Effects of Agent Orange show art Effects of Agent Orange

PodcastDX

Tara Parham, the daughter of a disabled USMCS Veteran, eighty-sixed her 6 figure income career in Government Healthcare and Lean Six Sigma, after falling ill with the first of 3  rare diseases that are associated with her dads exposure to Agent Orange, a dioxin used while he was serving in the Vietnam War. Her goal is to shed light on those who are struggling with the many debilitating conditions from Agent Orange and other Rare Diseases; to advocate for  those who are struggling to find Help, their voice, and are unable to advocate for themselves.  TRANSCRIPT s8e10- PodcastDx-...

info_outline
 
More Episodes

 

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.