Sawbones: A Marital Tour of Misguided Medicine - Sawbones: Hemophilia

Episode Date: March 31, 2016

Dr. Sydnee and Justin try to apologize for their poopie episode with an episode about blood. They are bad at apologizing. Music: "Medicines" by The Taxpayers

Saubones is a show about medical history, and nothing the hosts say should be taken as medical advice or opinion. It's for fun. Can't you just have fun for an hour and not try to diagnose your mystery boil? We think you've earned it. Just sit back, relax, and enjoy a moment of distraction from that weird growth. You're worth it. that weird growth. You're worth it. Alright, time is about to books. One, two, one, two, three, four. We came across a pharmacy with a toy and that's lost it out. We pushed on through the broken glass and had ourselves a look around.

Some medicines, some medicines that escalate my cop for the mouth. Wow! Hello, everybody. to solvones mental tour of Miss Guy medicine. I'm your co-host Justin McAroy and I'm Sydney McAroy Still don't sound normal. It's been six weeks It's a heck of a cold and I still can't snap back from it. What's up, Sid? You're fine. I mean I'm fine I'm fine. I mean you just talk a lot. That is true I can't give my instrument the time it needs to recuperate. You call it your instrument. That's your real problem is you call it, you call it your instrument.

I was especially taxed during the max fund drive, which we, because we recorded a lot of extra stuff and extra long episodes and I just was. I love to do so many podcasts. It was so hard. Eat my butt. It's what I love doing. Everybody loves me for it.

It was so difficult to do kiss my grits No, I want to thank everybody for being so generous during the drive. We had like 9400 New and upgrading donors the maximum fun at work. Thank you all so much so much your support means everything to us We really appreciate it and because you all were so good to us. I am positive And because you all were so good to us, I am positive. Sydney assures me that we are going to have last week it was kind of a, kind of a lot of poopy talk. And I didn't realize how much poop would bother everybody. Yeah.

I thought, I mean, I know it's something that, like I understand that it's gross inherently. Like I get that. But I kind of thought, it's one of those things that like when you're a little kid, you like to talk about poop and then as you're an adult, you pretend like you don't like to talk about poop, but everybody secretly does. That is not the case.

You were all, not you were all, but a lot of you were a little unsettled. We'll put out by it now. Now, and I am sorry for that. So this week, Sidney promises that she's got some then a lot more less squirm inducing. Yeah, a lot more relaxed. A sort of a just a light topic. So what do we got Sydney? Absolutely There are a lot of people who have been asking for me to talk about this for a while and so and I thought you know Following on the heels of poop, what could be easier

for everyone to deal with than blood? So, so I thought we would talk about hemophilia this week. You don't actually think that that's like, okay. What do you mean? You don't actually think that that's okay. Like I know we all have a lot of fun here, but you don't think blood's like another cool topic. You know we got to have a good chilled out topic. Well, it's not, I mean, there's no like, like, there's no fecal material in it. I mean, there shouldn't be.

Hopefully there aren't. There aren't, inherently there aren't bacteria in it. I mean, unless there's a problem, like, it's a very, it's clean. It's sterile. It's just blood. It's like a caries oxygen. And it's got all kinds of good cells in there that protect you from infection and clot you

when you're, hopefully, when you're cut. I mean, like, it's great. Look, great. It's blood. It's weight. It's blood gross. I understand you're a physician. And like, but you're also, you have been talked up

with like, kind of a pod, some kind of pod person. Like, you still have human emotions and stuff, right? I, does blood, is that a bother something? Sydney, this is not, you're scaring me right now. You don't actually think this, right? I really don't understand why blood is upsetting. I mean, other than like if it was, but like you know it is, some people, right?

It is in the, it is in the emotional sense that like I don't want people to bleed because that's usually problematic. And so I am worried about their well-being or my own certainly if I am bleeding, it's gross though, right? Yeah, it's gross. It's gross too. Why don't you, why don't you, I'm sorry. I know some people pass out with blood. I just, I guess I didn't think of it. I don't know. Okay. I'm sorry Well, let's see where I've gone wrong. Let's let's keep tracking All right, well, I a lot of people have requested this topic. Thank you Andrew and Lauren and Sid not me another Sid

I'll be weird. Yeah, not thank you myself. No, Sid and Sarah and Joleen and Diane and Mike Thank you all for recommending this topic Because it's very interesting and there's a lot of history and I'm sorry. I guess it is somewhat upsetting for some people Well, let's talk about it anyway. Okay. Do you know what hemophilia is? It's when you bleed a lot and can't clap properly. That's pretty good. Thanks. I'm impressed Thank you. I'm impressed.

Thank you. I think most people have like a passing understanding of hemophilia. Cool, kind of like a kind of like a compliment and then diminish me like in the same breath. That's pretty cool. I didn't mean to. No, keep going, that's good.

Okay, sure. Most people are aware that it is a bleeding disorder, but it's actually kind of complex as to what causes it. I mean, why? I mean, I'm guessing you probably don't understand like what is gone wrong that someone has probably some bleeding issues. Probably some blood cells not doing something properly, right?

Sorta, yeah, sort of like that. So our blood clots, and it's important that our blood clots, right? Because not just because we accidentally bleed from time to time, you know, when we get cut or when we fall and scrape something or if something, you know, is going wrong in our colon or in our bladder or something. We bleed for lots of different reasons. But we also sometimes need surgery, right?

Right. Sometimes we want to get something pierced. And we need to get it backced. We need it back too. There are lots of reasons why we would need our blood to clot. And there are lots of ways that our blood clots. There are lots of different factors involved. We call them clotting factors. So that's convenient. Yeah, it's kind of like works on two levels. There's a whole cascade of them that takes place if you were to get cut a whole like domino effect of factors that get activated.

We call that the clotting cascade or coagulation cascade. And then there are other things involved. Things like platelets you've probably heard of. Things called like fibrin and plasma. And there are lots of different parts of your blood that are involved in clotting. The problem in hemophilia can actually be different. When we say the word hemophilia, we can mean different things.

For instance, let's say that you have hemophilia A, because there are different types. What that means is that you're missing factor eight. Okay. So that's one of the factors in the clotting cascade. This is why the disease was tricky to treat for a long time because if you have hemophilia, a, you've got the other parts of the clotting pathway. You don't have factor eight. And is it, is it like a, I mean, is domino a applicable metaphor here in that

if you take one out, the whole thing breaks down. Others won't be activated, yes. There are, I mean, it is, if you look at the clotting cascade, it's not a direct domino. It's almost like one of those really fancy domino setups with like a web where there are different dominoes that could hit one domino. So it is not as simple as to say,

if you're missing one factor, it just stops in the chain. There are other things involved in other side pathways that can happen, but each factor is absolutely very important. And some are more important than others. In factor eight is particularly important for its place in the cascade. Similarly, if you have hemophilia B, you're missing factor 9, and that is also very important in the clotting cascade. So different types of hemophilia equals missing different clotting factors.

Does that make sense? Yeah, for sure. Factor 8 deficiency or hemophilia B, by the way, is also called chrysmist disease. Oh, a festive. So if you ever hear that, that's what they're talking about. Do we talk about Christmastines? Do we talk about Christmastines? We didn't. We talked about discussing Christmastines for our Christmas episode.

Yes, right. And then we didn't. But it's actually not named for the season or the holiday. It's the name for Herb Christmas. Stephen Christmas. Oh, man. Yeah. Good guess.

But it was named for Stephen Christmas who was the first person diagnosed officially with hemophilia B back in the 50. The first person, not the person discovered it, the first person to discover it, or the first person to get it. Yeah, well, no, he wasn't the first person to have it. Lots of people had it, but the first person to actually officially be diagnosed with hemophilia B was Stephen Christmas and so on.

And he had to go in the room and just ruin Christmas. Just like that. You were in the hallway. I mean, Stephen Just ruin Christmas. Just like that. You're in the whole world. I mean, at least even who stole Christmas. He's the name wasn't Steven pizza. That would have been bad. Pizza disease. Pizza disease. That would have been too bad. I call that heartburn. Bark bark bark. Heart noise. Okay. Go ahead. It is hemophilia is an excellent disease. Do you know what that means?

Absolutely not. Justin, you had some genetics at some point in science class. Oh yeah, does that mean it affects mainly men? You read ahead. I did. Okay. Like sure it does, Justin. You put me on the spot.

You could have just let my ignorance lie, but you had to put me on blast and like really do that thing that I love where you're like, are you sure you're a dummy? And I have to be like, no, no, no, I am for sure I'm not me. So I got defensive. I got, you know what, I don't have your knowledge base, but you know what I do have. What's that? Savvy. Okay, Justin. So you know it largely affects my car. I'm over here reprogramming the whole simulation. Sure. Why would an X-link disease largely affect men? Because men have XX.

Nope. Men have XY. Backwards, okay. Men have XY. Anyway, when we're talking purely, and again, this is purely based on a genotype, we're referencing some gender terms. Sermon or XX, men are XY, men are.

Okay, if we are talking genotypically male, sorry, yes, I should have been more serious. Yes, genotypically male. Genotypically male, XY. Genotypically female, we say is XX. Got it. Okay, got that. Got it.

So we're talking purely about sex chromosomes at this point and not the larger issue of gender. But an X-link disease means that the gene, the problem gene that's causing hemophilia is on the exchromosome. So a woman, genetically has two exchromosomes, whereas a male would have one.

So if you're getting your exchromosome from your mother, what you do, right? If you are born a male, you get an ex-chromosome from your mom and a y-chromosome from your daddy. You're right. Okay. You can't get a y-chromosome from your mom

because you're not having a problem. Yeah, and I have one. Got it. Okay, so if you only have one ex, so if you get the affected chromosome from your mom, that's it. You've got hemophilia. Okay. Because you only have one X, so if you get the affected chromosome from your mom, that's it. You've got hemophilia, because you only got one X. Whereas a female gets two X's. So she's going to get an X from her dad, who either has hemophilia or doesn't, and then

an X from her mom where she's rolling the dice. One of those X's has hemophilia or the other one doesn't. So a woman is going to probably not be affected because she's got a good gene on the other X chromosome. Okay. So the only way a woman could be affected is if both mommy and daddy give her an affected X. Okay, got it.

Statistics on that are just low. Okay, interesting. Does that make sense? Yes. But you don't get it to you. I do, I do get it. I'm gonna drive some Punnett squares later. No, I'm like Gregor Mendel over here. I got it.

This dates back to ancient times, most likely, even though we don't chemophilia does, even though we don't see the word hemophilia dating back to ancient times. But there's some hints of it. For instance, circumcision is something that has been practiced in the Jewish faith for a very long time. And there are provisions specifically that you can find throughout kind of ancient history and in the Talmud, where they say, if you have two male infants, like two brothers

who are both died during circumcision, then you have another male in that family, they actually do not have to go through circumcision. There's actually provisions that say you can forgo it. The thought process being that if two boys in the family had bleeding problems to the extent that they died following circumcision, the third may as well. And this is kind of an understanding of a genetic disease, even though we didn't understand what it was yet, you know? Yeah, I think it's weird that it takes two. Like for me as a parent, if my first kid beefed it after we got circumcised, I would be like,

you know what, let's leave it on. We're good. I mean, I just spent, you know, I just spent a chance at that one. Yeah, you know what, I'm not a risk taker. After my first kid did that whole thing, I'm just gonna go ahead and stick with, stick that foreskin right on there.

I think that's fair. I think my scientific inquiry probably ends where my child begins for me personally. There is mention in the Bible of a woman who had himriges for like 12 years, and then Jesus healed her of those himrages, just these bleeding episodes. So that could have been a reference to him, if you leave. Because let me mention he may feel you can affect women. It's just much more common.

I got it. No, I got it. And there was Abel cases who was an Arabian physician from the 10th century who wrote kind of of these like pedigrees, these histories of families where there were men in them who blood to death and nobody knew why. So people sort of understood that there was this genetic bleeding disease, but nobody knew why it was happening or exactly how it was passed from person to person and it would seem to skip generations and nobody knew why. Now, before I get into how we figured all this out and some of the crazy things we tried to do for it before we knew tried to do for it, before we knew what to do for it, I think this is a good moment to talk about why hemophilia is

known sometimes as the royal disease or the disease of kings. You may know this, Justin, but hemophilia played a major part in the royalty of Europe. Yes, I did. Yes. Have you heard that reference? I don't know how, but yeah, I know basically. So I'm going to try to walk you through some of this because there's some interesting facts. But let me recommend that if you're really interested in understanding it, right now you go Google like European Royal Family Hemophilia pedigree something to the

some mixture of those words okay you know hemophilia pedigree royal family something like that pedigree is like one of those charts of inheritance does this happen on stuff you missed in history class they say like listen guys we're gonna try best here but uh just just google it I just think this is something that no I think if you could see it if you can see the family tree It's easier to follow yeah I'm gonna give you a lot of names and who had him a feeling and who didn't and I think if you can see the little boxes And they're like this one this shaded for a carrier and this one is colored this color if it's a person with him a feeling

I think it's easier to see okay Got it. I'm with you. So, Queen Victoria of England, who reigned from 1837 to 1901. Sorry, I remember from the Dr. Havop said, with the werewolves. Perfect. Okay. She was a carrier for the hemophilia gene. Okay. Okay.

So she was not a hemophilia, actually did not have hemophilia, but she had it on one of her excromisms, right? Right. So she carried it and could pass it along to her children with you, which she did. So let's start talking about some of her children. We're going to talk first about Leopold. Leopold was her eighth child, her fourth son, and he had hemophilia. He had hemorrhages throughout his life. You can get spontaneous bleeding, not just like when you get cut, you bleed a lot, or you get a nosebleed that won't stop. You can get spontaneous bleeding in your joints, worst case scenario in your brain. So yes, it can be a very crippling, dangerous disease, or at

least at that point in time it could have been. And it was for Leopold. He died from a brain hemorrhage as a result of it. But before he did, he had some kids, which is important. On a side note, he had a couple different doctors. One of them was Jenner. You've probably heard of Jenner. No. In Dr. Jenner, okay.

He studied him and he came up with a theory based on studying leopold that hemophilia actually had more blood than the average person. I had to let it off, let it stay. Yeah. And they had really small blood vessels, so it just kind of spilled out all the time. That's not true. His second doctor, Dr. Legg,

thought that staying in warm climates would help, which is why leopold spent a lot of time where it was warm. He actually died in cans in France. But strangely, Leg also advocated in papers that he wrote on the subject that men with hemophilia not be allowed to marry or have kids, which is weird because Leopold did both of those things.

Yeah. And if the royal family kind of had wind of this, you would think they may have thought, well, this is not going to be good for our descendancy. Yeah, let's get this, let's weed out this particular branch from the family tree. Exactly, but they didn't, they didn't seem to mind. They actually wanted to keep it all kind of under wraps and secret, which they were pretty good at doing. Some awkward dinner parties, I'm assuming, people to start bleeding out of their joints. Well, not like into your joints like your knee will get all swollen. Yeah. Blood in there. Yes.

Passable. My lord, passable. Is that blood coming from your dead duct? Passable. It's not as it's not. No, mother, it's some tomato sauce. Mother, no. Passable. I am bleeding from your house? No mother You're embarrassing me mother When Leopold died I'm sorry about that this is on you. I'm not making this hard All right When Leopold Lots of gifts you said you got to pick it up. Oh, know, I'm sorry. This is the most interesting part though.

Okay. This next sentence or the whole thing. Sorry. When Lee of Folk died suddenly, there was no mention of what he died from, even though it was very clear that he died from complications related to hemophilia. But if you looked at journals from the time,

the Lancet and the British Medical Journal, which were both, you know, very popular at the time and still are. There were obituaries for him published in both journals and also huge articles about hemophilia. Like in those alternately facing pages? Exactly, exactly. Like, we're not going to, it was like out of respect for the royal family. Like, we're not going to say it, but we kind of all know

Like he's got two doctors who are experts in hemophilia who are his personal doctor, right? Yeah, well, we're not stupid But a good note Leopold's death actually hugely accelerated research in the area of hemophilia That Leopold wish we'd maybe got on that a little bit sooner, but okay. Sure. Yeah. His daughter Alice was a carrier of it, and she also had a son who had it. More importantly, though, Queen Victoria had two daughters who were carriers. So Leopold's sisters, okay. Alice was one daughter. She would give birth to a son with hemophilia and two carrier daughters. Okay, carriers are people who are unaffected but continue to carry the gene along, right? Right. So

Alice is two daughters, so Queen Victoria's grand daughters. This is important. One was Irene. Irene married Prince Henry of Prussia bringing the hemophilia gene into what would later become members of the German royal family. So this is where hemophilia starts to become part of the German aristocracy. Alexandria almost married Prince Albert, her cousin Prince Albert. He proposed to her, she refused because she didn't love him

And if she had married him she could have introduced he mafealia into what is now our current British family like the current line of British royalty But she refused instead She married Nicholas the Zar of Russia. Oh gosh gave birth to a Lexi Who did it of course have he maophilia and who was tended mainly. Do you know who was the main person, medical person to take care of Alexi? Rest butan. Rest butan, exactly. Who was thought to be the only person who was a...

From downtown, Smiroll, you can't give me anything for that. Sheesh. I mean, I don't have a fancy sheet of paper in front of me, okay? I'm fine, I'm about to see my brain here. That was good though. Yeah, no good. Getting okay, I'm impressed, I'm impressed. I don't have a fancy sheet of paper and firmly, okay? I'm fine, I'm about to see my brain here. That was good though. Yeah, no good. I was getting, okay, I'm impressed, I'm impressed. Woof.

I'm impressed. So I know how at recipe even felt when he got stabbed all of those times because you have you, I've wanted to do. You've wanted me deeply in my life. Resurute and was thought to be able to alleviate Alexi's suffering, largely through hypnosis.

Sure. And of course, I don't know. Of course, the strain of the illness and the effects of Respeutin on the royal family were supposedly big factors, thought to be big factors in the Russian revolution that would follow. Right. Right. One interesting side note, a couple, that would follow. Right. Right. One interesting side note, a couple. One, Prince Albert, who Alexander almost married, who would have maybe revisited, you know, human filial in the current British royal family, Prince Albert for a while was thought to be Jack the Ripper. Oh, really? Yeah, there was some theories floating around about that. He wasn't, though, don't worry. And although Irene and Alexandria both were carriers, as we've demonstrated and carried on, you know, the gene to different royal families, she also gave birth to a daughter who wasn't a

carrier Alice. This is important because, again, another close call for the current royal family. Alice gave birth to Prince Philip who of course is currently married to Queen Elizabeth. Another opportunity for it to kind of affect the current family. But it didn't. The other part of this that's interesting is Beatrice who we really haven't talked about yet. She gave birth to two affected sons as well as a daughter who was a carrier Victoria, who married King Alfonso, the 13th of Spain, bringing hemophilia to the Spanish royal family. None of the current members of any royal families are affected by hemophilia though. Okay. Yeah, so don't worry about that. Everybody's going to be just fine. That's very, very worried about the European aristocracy.

Thank you. Right? It's Erisuxi. I agree with you for talking about royal families. There's probably another word for it. I don't know. Anyway, anyway. So there you go. There is hemophilia and all the European royal families and why

everybody, it was all Queen Victoria. So in closing, go Google it. So how do we start to understand he may fail a bit better, Sid? Justin, I'm gonna tell you about that, but first, why don't you follow me to the billing department? Let's go.

The medicines, the medicines, that ask you let my God for the mouth. I'm Jesse Thorne, the host of Bullseye. Bullseye's your guide to what's good in pop culture. Every week, I'll sit down with people like Elvis Costello, Elizabeth Banks, and Spike Lee to talk about their creative work and their lives. Find your new favorite TV show, book, movie, or album and gain new insights into the things you already love.

That's Bullseye, for MaximumFun.org and NPR. So, Sydney, I'm ready to take a stand against him, Philly and I hope you are love. That's bullseye for MaximumFund.org and NPR. So, Sydney, I'm ready to take a stand against him, Philly and I hope you are too. How do we start to fight back? So, in the 1800s, we finally began to understand hemophilia a little bit. First, there was John Conrad, Otto, a doctor from Philadelphia, who traced back familial, what he called bleaters in different families started and then uh... the term hemophilia

actually didn't come about until eighteen twenty eight uh... researcher and Zurich Friedrich Hoff who finally named it hemophilia now you're just feeling like you love it like you're crazy for it like so it's like you're you're like you're crazy yes i mean like it could be a lie to you. But you're crazy about it. Well, I mean, it's like your prone to bleeding is what this is really right. Like app to bleeding. It's not like your mummy's blood.

Yeah, not like you just really love bleeding. There's loved bleed. No, that's not. I don't know. No, that's not right. But I can understand why you would think that. Thanks. Throughout the mid 1900s, we started to discover

all the different types of hemophilia by different factors. As we were able to isolate different clotting factors in the blood, then we began to understand more. It's a blood typing and more, yeah. Exactly. So then we began to figure out different things. But even as we began to understand that people had problems clotting and that there were different factors

involved in clotting, that was a problem, we still didn't have a great way to treat it because we didn't have a great way to store blood yet. Oh, right. We didn't know exactly how to, yeah, it took us a while to figure out how to break it all down and then it took us a while to figure out how to keep it fresh.

And so often, if you were to get a blood transfusion, it would be a straight, fresh, whole blood transfusion from a family member Was kind of like our best bet like I don't know. Let's get somebody related to because then it's probably fine And we're just gonna take blood out of them and put it directly in you that'd be exhausting You'd be like falling around your cousin like please don't trip. Please Please no don't fight that bully off item for you. It's fine. Fine This was obviously less than ideal it might might not have matched. And if you look at the average life expectancy when we go back to the early 1900s, it was like 13.

So obviously we needed better treatments. And there was a lot of other stuff tried at this time. Stuff that Wasn't necessarily great ideas. Calcium was one of the earliest things recommended. There was some thought that maybe if you didn't have, maybe you didn't have enough calcium in your blood. So calcium salts were prescribed. People started taking extracts of thyroid gland and bone marrow and injecting it into people, thinking maybe that somehow would make you stop bleeding.

Oxygen was a common treatment. I don't know, I mean, I guess it doesn't hurt. No. Lime was thought to be a treatment for a while. Absolutely not. I can call fake flu on that one. Hydrogen peroxide was popular, which I guess I can kind of understand that in the sense that like I feel like every, I have lots of people I see who will have any kind of wound

or ailment and they'll just kind of dump some hydrogen peroxide on it So I can see where that's just I was my dad man when I was a kid I have so many memories my dad hurting himself just dumping How about a hundred of peroxide? I think because it foams up a little bit you think like there goes there It's really hoping just don't do that no no no Is it not good for anything? It's not really it's not really helping very much. Not anything. No. No. No. Is it not good for anything? It's not really, it's not really helping very much. Not really? No. It's not. It's not. I mean, I guess if you're going to use it once, it's not really going to, it's not, no, don't do that ever. Using it. I'm going

to get it down a lot. No, don't gargle. What? No, don't gargle hydrogen peroxide. It's like a solution, it makes with water. No, don't do that. Oh man. No. Like if you want to dump it on a cut, I guess that's fine. But then please stop dumping it on the cut because you're just gonna inhibit healing. So like if it makes you feel good to do it the one time. What's it for?

I don't know. People like the foaming. They can like the... I feel like a tell-for- You can have the same effect when you're doing it by a dial on it. When was the last time you went to a doctor and they dumped hydrogen peroxide on you? I told you to.

Or I see what I'm going for like a folklore, like home remedy type thing. I'm assuming they got better stuff. Yeah, and if you listen to our show a lot, you know that those folklore home remedies always work so well. Okay, this has been very eye-opening, but thanks for thank you, I appreciate it. Gelatin was recommended, which I can see where people thought like, I don't know, that one, that makes things sticky. Sticky, yeah.

Um, in the 1930s, diluted snake venom was used. Okay. Because it did, there were some snake venom that could cause you to clot. So that was probably dicey. It was risky, risky business. In the 1950s, there was a one doctor who kind of started recommending you let bee sting you. Like literally, like he had hives and he would like hold a B2 your skin and let's stung you. Can you imagine being that kid who's just sitting there watching the B knowing that like the goal here is that any second should sting you. Yeah.

Yeah. Um, whew. Uh, birth control pills were recommended, which actually isn't a, isn't a crazy thought because we know that birth control pills, estrogen treatments in general can put you at higher risk for clotting. Oh, okay. So obviously this was not the best course of treatment, but this is not crazy thinking. As opposed to peanuts, which were recommended by one doctor who had hemophilia, who noticed that he had a bleeding episode stop suddenly one day and he connected it to when he ate a handful of peanuts and so for a while peanut extract was given to people. I was just going for it. Yeah, I mean I like peanuts but even once we figured out how to give people plasma

there was there's so little of each clotting factor and like a whole big thing of fresh frozen plasma, blood plasma, that you would have to give kids tons of plasma in order to replace enough of the clotting factors they were missing. Which for something, it's like a finite resource, it's kind of tricky. Exactly, you're just trying, and you wouldn't be doing this unless the kid was already bleeding. So you're trying to shove as much of this into a kid who's bleeding as fast as possible to try to stop the bleeding. It was not a great situation.

So by the 1960s, we really hadn't improved. This 1960s, we really hadn't improved stuff much to the life expectancy was just under 20. So in those years that followed, we had a lot of great breakthroughs. In 64, the clotting cascade was published in nature, and we really began to understand all the different things that were involved with the process. In 65, Dr. Judith Graham figured out that if you thought out plasma, those bags of frozen plasma, if you thought out the stuff that the precipitate that's left, it's called cryoprecipitate, it's just this really concentrated stuff that contains a ton of factor eight. And

when she figured that out, you could give that to patients instead of the whole bag of plasma, and it was a really concentrated solution of what they needed. So you'd give them a lot less, a lot faster with a ton more. It's like pain and scraping after you. Yeah. The steak. That's just a really, really good stuff. Exactly. This was the really, really good stuff that Hemophilia X needed. After that, we figured out how to give just single factors and we started making like, here is a bag of factor eight, here's a bag of factor nine. And we started giving people

prophylactic treatments so that instead of just treating them when they bled, you could come in and get regular injections of things to stop you from bleeding, right, to give you what you needed so you wouldn't bleed so much. Then we started making synthetically available factors and we had to start finding ways to, because some people's body started fighting back and creating antibodies against things and we found ways to circumvent that as well. Without getting into it, it started to become much more manageable. The only major setback, and I won't belabor this point, but I think you can't talk about hemophilia without mentioning it, was in the 80s, which we were figuring out better and better ways to give people blood products, but we had not yet figured out screening for blood products.

So we had a lot of major setbacks for people who have hemophilia in the 80s because of HIV, and then after that hepatitis C, great number of people with hemophilia were affected by HIV and hepatitis C as a result of these transitions. Have he means? They weren't screening. We weren't screening blood products for these things. So they got HIV as a result of that.

So obviously we are much, much better at that process now. And it is exceedingly rare that you would ever get something like that for a much transfusion. Thank goodness. In addition, we have new drugs, we have recombinant stuff, like I said, synthetics. We need less frequent injections. There are new drugs coming out now that so because it used to be something you would have to get an injection of almost every single day. Wow.

Yeah, to prevent bleeding episodes. We're getting much better. It's still really expensive. It's still pretty time consuming, but we're trying to make that a better process. And now there are gene therapy trials underway to find ways if we could inject patients with hemophilia with the genes that they need to make those clotting factors and they would become like part of their own DNA. And then they could make some of that factor or maybe enough of that factor,

or maybe enough of that factor on there. Yeah, so those trials are now underway to see if maybe we could find an even better way of treating it. So we come a long way. Yeah, absolutely, especially from the last and the next day of 13, that's awesome. It's amazing when you look at, I mean, this is all just really been in the 1900s

and largely since the 60s. I mean, that's really, that's that recent that stuff has gotten so much better. Wow, that's wild. If you are somebody who's literally feeling we look to hear from you, solbones at maximumfund.org is our email address. We always like to hear from people who have a little more first-day experience with these topics than we do. We are at Solbones on Twitter. We are solboneshow.com. If you ever want to link somebody to our program where you can just send them our iTunes link, believe it's itunes.com slash solbones will work just fine.

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