How Down Syndrome Works

but still we're recording in down Syndrome Awareness Month. And I had no idea that October was down Syndrome Awared, So I think it's pretty cool that it worked out. Anytime it works out like that. That's right. We're we're recording way ahead of time. We're trying to bulk up for our Christmas holiday break that we like to take. That's right. I voted today early voting. If that shows you when this is congrats Chuck. And it felt good to just get or done, get it out of the way.

And it feels good to do this episode because down syndrome is a condition that is really really really changed. Yeah, a lot like in our lifetime, like since since the nineteen seventies. Uh, and how it's how it's viewed, how it's accepted, and actual health outcomes, and a lot of those health outcomes actually have something to do with how it's been viewed and accepted, which is remarkable and sad, you know, if you're speaking historically. Yeah, yeah, for sure.

But I mean that's just the headway that's been made things to in large part the disability rights movement. Yeah, people with Down syndrome have really benefited from that, and I'm happy it can be about that too, that's right. Um, we should say from the outset, we're talking about a group of human beings who, like any group of human beings, are um, incredibly varied in talent, skills, hopes, dreams, um,

medical problems, facial features, all that stuff. So to say, like you know, down syndrome people all look a certain way or they're all happy all the time, is it's stereotypical and incorrect at the very least, you know. Um, So we just want to preface all of this that we're talking in in total generalities here about Down syndrome people in general. Just keep in mind this is not some pet group, like any group of humans is not

some pat group, that's right. Although I will say every kid that I've ever met who had Down syndrome, which has been a handful, have been some of the most wonderful, loving, sweetest kids I've ever met in my life, every single one. And I met some other kids who are just jerks. Yeah, for sure, for sure, And again it's a it's a stereotype. It seems to be rooted in a lot of anecdotal evidence.

But just just keep in mind, like the people with Down syndrome have rich inner lives, and they're happy, sometimes they're sad, sometimes they're angry, sometimes they're frustrated, sometimes they're glad sometimes Like again, they're human beings, so just don't

forget that. UM. So again we caveated that by saying we're talking in general, and this doesn't apply to all people with Down syndrome, but there are some facial characteristics that the majority of people with Down syndrome typically have that um make them readily recognizable. I think, yeah, for sure. And we should preface this also by saying that at this point it's about I've seen between one and every seven and eight hundred babies born in the United States

have down syndrome. So it's kind of somewhere in that range. And if we're talking typical physical characteristics, almond shaped eyes that typically slant upward. Um. Sometimes the net can be shorter, uh, the ears can be smaller um sometimes and some of these didn't even know. There can be tiny white spots in the irises of the eyes. Um. Hands and feet maybe a little smaller. And another interesting one increase a cross the palm of the hand. Did you ever heard

of that? I had not? Uh. And then small pinky fingers that sometimes can curb towards the thumb uh and are generally a little shorter than average. Yeah. They also typically have UM less than average muscle tone, and loose joints frequently UM. And one of the things that I did not realize before but I do now after doing this research is that a lot of the stuff that I think people chalk up to cognitive impairment among down syndrome people are actually the result of UM motor impairment.

They're actually like, like a really good example is speech. They tend to UM become verbal later than non down syndrome kids. UM, but it's not because they don't know

how to talk. It's because their mouth muscles haven't developed enough to actually talk, and that can actually lead to a tremendous amount of frustration because you're a kid who is unable to express himself for herself, and you would think, like, you know this, this kid with Down syndrome can't talk yet because of cognitive inabilities, and that's just not the case.

It's not the case. Um. There are also medical issues that are typically arise when you have Down syndrome, and this is just something that you know that parents need to know if if you have a baby with Down syndrome, you're gonna get a lot of information thrust upon you. And there's a lot of information medically out there. Um. One of the big ones is a congenital heart defect, which is about half the people with Down syndrome end up having this. About half might have some hearing and

vision problems, um, which can range. You know, the vision can be anything from cataracts to just regular role near sighted and far sidedness to um uh strabismus which uh, that is something I've heard of before. That's when the eyes don't track together. Yeah. A lot of people used to call it being cross eyed. Yeah, exactly, um. And then I think later in like the puberty years, they found that sometimes they can lose their sense of smell.

Is that right, Yes, which is fascinating, And we'll talk a lot of a little more about that later on because they may have found a way to treat that incidentally. Um, but yeah, there seems to be like a decline in ability to smell and in cognitive abilities around puberty. Okay. Uh. Thyroid problems can happen, um, usually hyperthyroidism, UH, tummy issues, UH, sleep apnea or asthma, like some kind of general breathing issues, childhood leukemia, and then another thing that we'll talk about

a little bit more. Um. And it's very sad, but Alzheimer's disease can come pretty early sometimes, right. So what we just did, Chuck, Um, from what I understand is what a doctor will basically tell a parent when they find out that their child, or their fetus or their child in the womb, however you want to put it,

Um almost certainly has Down syndrome. And I saw a Down syndrome rights activist who was like, yeah, I think if you gave an expecting parent a list of all the possible medical problems any person could have like no one would have a kid. So just bear in mind that, like there's actually more it can be. It can be more pronounced than this, it can be less pronounced than this. This is just kind of the Down syndrome population just tends to have these problems more than the general population.

That's a good way to put it. Uh, And we'll talk about this a little bit more too. But your chances of having a baby with Down syndrome increases as you get older. So if you're twenty five years old, the chances about one in one thousand, two hundred and fifty, and then if you're forty plus that goes to about one and a hundred UM. But we said, now it shakes out to, you know, an average of about one and seven to eight hundred when you take the full

you know, birthen age range, right exactly. I also saw that somebody who has already had a baby with Down syndrome is more likely to have another baby with Down syndrome. UM and you said something about the syndrome being tied to the mom's age. I saw something like nineties something percent of Down syndrome cases are the result of UM.

The donation of an extra chromosome by the mom. And I didn't understand that UM until I saw it explained by UM an author from an Atlantic article It's really good. Her name is Sophia Zang, and she explained that UM. I didn't realize this either. UM. When a woman's eggs developed, they actually developed while she's a fetus, before she's even born. Her eggs are are set and they contain one set

of twenty three chromosomes. You put that together with the twenty three chromosomes carried by a male sperm when they fertilize, you get a full forty six chromosomes. But over time, as the woman ages, the proteins that hold those chromosomes in place and lock them in where they should be UM, that can degrade, and so they can kind of move around or do different things, or get copied additionally accidentally.

And that is the basis of Down syndrome. It's also called trizoni one, which means that there is a third copy of UM chromosome one. That is that's Down syndrome. That's what causes Down syndrome. It's the one thing all people with Down syndrome have in common. Almost all people I should say not. It doesn't even capture the full population of down syndrome if you think about it. Yeah, and like you said, the UM, I think in nine of the cases when you were born with that extra

number twenty one chromosome, it is inherited from the mother. Uh. And that is it looks like usually as a result of the degradation of that protein that's holding everything together. So it's really I never knew that. It's uh, it's pretty amazing that we know so specifically how this stuff works now. I think it was Chromosome twenty one was the second human chromosome that was fully sequenced as part of the Human Genome Project, and it's that extra chromosome.

Is that number twenty one that's uh, that causes all of it. Yeah, I saw that. It's one of the smallest chromosomes, if not the smallest chromosome, but it's responsible for UM encoding anywhere from I saw two hundred to four hundred different genes, and some of those genes expressed different proteins UM that can be used in more than one reaction. There's one called nuclear hormone receptor interacting protein. Awesome name probably not a band name though I don't

think so too much. It's involved in twenty different functions in the human body, just that one protein that's expressed by that by one of those two D four hundred genes on chromosome. So when you put all that together and you realize how many proteins are involved in how many different functions, that's how you get kind of this galaxy of symptoms that make up Down syndrome essentially. Yeah, and you mentioned that the trisomy twenty one doesn't even

cover the full range of Down syndrome. That is because that's about the other five percent come from two other ways that you can have Down syndrome. One is translocation down, and that is when there is either a piece or a part or either a whole extra copy of number twenty one that's out there, but instead of being distinct and separate, it's attached or translocated to a different chromosome. And that's the accounts for three percent. And then uh, and this is I know a kid, a friend of

our family who has mosaic down. That's the third type and that is accounts for the other two percent. And that is when um, some of the cells in your body do have the three copies of the chromosome twenty one, but others have the two, which is what you usually have. So it's sort of a mix and they're all kind of similar. But if you do have mosaic down, then you tend to generally have fewer of the typical features

that you think of when you think of Down syndrome. Yeah, they represented by a percentage of cells in your body that have the third chromosome, and that that percentage reflects that UM. Also that mosaic um down syndrome occurs after the egg is fertilized, so it occurs during fetal development, like a cell divides um differently, and that that third chromosome is generated in some of the cells. That's why some of the cells go on to divide. They didn't

have that that um that different division. They had regular too chromosome or two pair chromosome division. Right. So UM, that explains one of the mysteries I think behind Down syndrome, which is how, um, you could have identical twins and just one of them has Down syndrome and the other one doesn't. Oh yeah, did you just figure that out? Like is this breaking news from you? Oh? I see, Uh, maybe maybe it's my it's my little contribution to the field.

All right. I think that's a good sort of general overview. Maybe we should take a break and we'll talk a little bit about I'm just gonna go and say it, the shameful history of how humans dealt with people with Down syndrome. Sorry, geh. So, if you're talking human history, there has always been it seems like Down syndrome. Um, you you dug up this was that like a clay sculpture or something. I didn't dig it up, I think in archaeol just did. But yes, I found it on

the internet. That counts. Friend, dug it up on the internet. That was from five d CE. That it very much seems to be someone with Down syndrome. Uh. There are also been other various works of art. There's a very famous Flemish painting called the Adoration of the Christ Child from fifteen fifteen, where there's an angel, quite a few angels, but one of them seems to have the physical characteristics that we associate with down. So it has been there for a long time, but very sadly if you were,

I mean, it wasn't even that long ago. Certainly if you were, you know, really far back history, your chances of living with Down was uh, pretty low. Um for you know, living any any kind of life. If you lived at all, it's a very short lifespan back in those days, and then if you did manage to live, you were probably sort of cast out of society and institutionalized. And this kind of stuff was going on up until

like the late sixties and early seventies. Yeah, I think in nineteen sixty in the United States, if you had Down syndrome, your life expectancy was ten years old. And again any time you hear like, oh well, the people in olden days just lived to be thirty five. Now, so many children died at birth that its skewed the

average life expectancy that far downward. And that's understandable, especially you know in pre medical days, um, because so many I think like half are born with congenital heart defects and that you have to go undergo surgery starting about three days after you're born when you have something like

that to correct it, and it takes multiple surgeries. And before the advent of that, yeah, that was you were not going to live very long as a baby because you had a congenital defect and no one had any idea what that even was, let alone how to treat it. Yeah, it's UM. If you wonder where it gets his name. In eighteen sixty two, there was a English physician named John langdon Down that's where the name comes from, who

first identified it. UH. And it was sort of an important distinction at the time because it did make a distinction between UM, what at the time they categorized as a mental disability and an actual sort of well, you know, it took a long time before they identified the chromosome issue, but UM, it was a big distinction at the time, and for many many years they UH in this. You know, Olivia helped us put this together, points out that this

is very offensive in many different ways. But the term mongoloid was used UH, and this could be an interesting

short stuff. It was based on the idea that if you were white and you had Down syndrome, then you might resemble someone who is East Asian or what they referred to as Mongolian back then, which was and this is the part that I think would be interesting is Johan Blueman Box racial classification UH system, which was Caucasian, Mongolian, which was East Asian Malayan, which is Southeast Asian, Ethiopian, which was basically any part of Africa, and then American,

which meant indigenous Americans. Um. Obviously that's super outdated, but I think it could make for an interesting, like historical short stuff. I think it might actually be its own um episode because I was thinking into it. Yeah, and apparently it's still generally respected even though it is the terminology is outdated, and of course there's way more um subcategories of people, and the idea of race is even considered a social construct now. But Bluemenbach is considered the

first scientist to purposefully divorce racism from science. Yeah, so as racist as you know, calling someone Mongolian out seems um like his purpose was to prevent that, to to just create a specifically scientific approach that's not racist to um two different types of people. Yeah, maybe we should tackle that. The long and short of this, though, is that the term mongoloyd was around, Like I remember hearing

that word when I was a kid. Yeah. That was Divo's first single in Yeah, that was the first single they ever released, was Mongoloyd. I love Devo? Yeah, I mean, otherwise they're they're pretty great, good feeling what a song. Yeah. The more I listen to them more, I'm like, these guys were just amazing. And then to think of like them performing in the late seventies and early eighties and coming up with this, it's like they weren't working off

of anybody else's stuff. It seemed like they were their own group. This good kids music too. By the way, if you're a parent and you have a young kid and you want to introduce him to cool music, like something about Diva like really made my daughter dance or early on, oh do whip it maybe the best song to dance to and definitely to run to as well. I have one more little music tidbit um uh music titles that were unkind to UM people with down syndrome, Uh,

black Eyed Peas. Do you know the UM song Let's Get It Started? Yeah, that was a re record. The NBA came and said, hey, can you re record your song Let's get are worded? Which is the original title of it? Oh? Really yes, And they re recorded it for the NBA and ended up releasing it as a single. It became a huge hit. But that is not Let's Get It Started as not the original title of that song or original lyrics. That's true, and that was the two thousand three that is a black eye on the

black eyed peas sor uh. So that term, the term mongoloid um, was actually sent to the World Health Organization in nineteen sixty uh from the nation of Mongolia and said, hey, maybe you shouldn't be using this word anymore. But it took a little while for it to catch on that we shouldn't be using that word. Uh. And now we just say down syndrome like we should. Yeah, it's not a downy or a down person or anything like that's

a person with down syndrome like any any other condition. UM. And that's also why because it's named after John Langdon down why it's a capital D lower case S when you spell it out. Yeah, And you know a lot of people say downs, which is incorrect. But I have seen that that has kind of become kind of accepted, and I think it felt a little more like resigned to than except you can see that so, Chuck. One of the things that UM is just a real blemish on the history of humanity, and I think UM, I

hope becomes even more so as we progress as a species. UM. People with down syndrome. Uh, we're targeted for you an assists. Like right out of the gate, they were an obvious population to target. They were considered um completely dependent on society,

a burden to their families, UM. And the premise was that you either needed to institutionalize them essentially from birth, like back in the day not too long ago, when you figured out that your baby had Down syndrome, you said, here you go, state, thank you for taking care of this child for the rest of his or her life. We're washing our hands of him or her or they were um sterilized against their will or both. Yeah, it's

very sad and shameful. And uh, I mean that that that's sort of what we've seen in time and time again of any kind of UM mental issues that people had. It was just like, you know, put them behind closed doors where everyone else can just not think about it anymore. Right, So that's I mean, they were neglected, They were probably beaten. In many K races, they had no access to medical care or any kind of stimulation. They were just basically left to rot for the for the sole reason that

they had Down syndrome. And again this was based on really faulty information the idea that they would never speak, that they couldn't walk correctly, they would never be able to, um uh perform any kind of like socially productive work or anything like that. There they were just to be

left in these institutions. And finally, in the sixties, the whole de institutionalization movement that really started to take hold that we kind of referenced in the rosen hand Han experiment episode, UM that that benefited people with Down syndrome too, And so they were released from the institutions and were now raised in at home in the community, and almost immediately the life expectancy for Down syndrome people skyrocketed because it turned out the greatest risk factor for death for

Down syndrome person was being institutionalized. That's how mistreated they were. Man, I mean that that's hard to even uh swallow, you know, like, hey, it turns out if we care for people and treat them as human beings and give them love and healthcare, then they'll thrive and survive. It's really sad, but it's it's actually, you know, since the nineteen seventies, um, it's not sad, it's been wonderful. By two thousand seven, Americans

with Down syndrome live an average of forty seven. Um. I've seen that number average go as high as sixty. I think there was an Australian study that edited about sixty Between nineteen seventy nine and two thousand three, the rate of death within the first year dropped from eight point five percent to five percent. And the quality of life has just been there's been a huge sea change. Uh. And we're like I said, we're talking within our lifetime.

This was like pre nineteen eighties. Keep we're still being institutionalized u from infancy infancy sometimes so they were you know, not necessarily banned, but just sort of weren't brought out in public, weren't taken to the movies, weren't taken to parks and things like that. Even in Benjamin Spock, you know, the very famous doctor Spock who wrote the famous baby book.

This was a you know, supposedly progressive person at the time, said that, uh, mongoloid babies should immediately be institutionalized, since if the infant merely exists at a level that is hardly human, it is much better for the other children and the parents to have him cared for elsewhere. Yeah, and This is Dr Spock, who was considered extremely progressive and arguably the person who ruined the baby boomer generation by giving poor advice to their parents. But regardless, he

was a very progressive voice. And this is what he was saying. That's how widely UM assumed this. This, this whole idea about down syndrome people was that late in in the century. So UM Again, in the sixties and seventies, the disability rights movement comes along and says, hey, these

people are being mistreated for no good reason. If you, UM, you know, if you visit with somebody who has been raised at home with parents who send them to school and care about their simulation, they're actually like their i Q starts to increase tremendously, I think. UM. There was a study from nine that found that UM down syndrome people raised in institutions had an average i Q of twenty to thirty UM and then those raised at home

with stimulation had i Q of about fifty five. And as people kind of change their perception, or I should says, down syndrome people changed other people's perception more and more. They started to graduate from high school, graduate from college, get driver's licensees, get married UM and just start living more and more normal lives. Again, depending on the amount of UM self sufficiency they're able to maintain. Some people with down syndromes live with their parents for the rest

of their lives. Some people have an apartment with their buddies, some live alone. And it's just again, it's a spectrum of what they're capable of or even what they are interested in. Yeah, and I was about to say, I'd love to see that study today because that was all the way in ninety nine. But thankfully you're not going to get that study today because they're no longer institutionalized like that. Yeah, there's one part of that study that I bet that they could just do i Q studies

and a bet that would be even higher. Is what I was trying to get to. If it was a good study, you could reproduce it using the same methodology today and you'd be able to compare the institutionalized to that you know, stimulated at home. Yeah, that's a good point.

So let's talk a little bit about UH. Development and this is sort of all over the map intellectual if it's development social development, and again these are generalizations, UH and you know you'll see in a lot of cases that UH, kids with Down syndrome can be behind in some ways by just a little bit, sometimes behind by a little bit more, sometimes ahead in other areas. UH. And it starts at birth basically UM in infancy, things like feeding UH. And this is because of the muscle

tone issues UM and hypermobility. Things like UM feeding during infancy can cause problems or you know, problems with feeding which can lead to constipation problems. UH. They may be a little smaller physically at first and be a little slower on the growth curve uh than their peers typically develop UM. But as they you know, they kind of catch up as they get older, and that generally improves and UM those developmental milestones you know, feeding themselves, dressing

and stuff like that. Using the toilet you mentioned speaking, they might happen a little bit later, right, I saw it explained as they they can and do develop skills throughout their lives, but they just reach goals at a different pace, and all kids reach goals at different paces.

So it's just about setting expectations, is apparent. One of the things that is available now that is really helping to increase not just life expectancy but also quality of life among people with Down synd room is occupational therapy. They've figured out that basically the moment that you realize that your child has Down syndrome after they're born, UM, you want to start different kinds of therapy. I think occupational to start because it's so hands on and physical.

But UM, some of the things I saw that you can do at home because they have smaller fingers and smaller hands and pinkies that curve on average. UM, one of the things you want to do is help them learn to hold a pencil properly or you know, manipulate things with their hands better. So you have them play with plato or UM paste areos to UM like UM

construction paper or something like that. Stuff that like you you use like the very fine motor skills for and then also ones that require like big motor skills like UM I saw. Focusing on your core is really important because there's a lot of people with downs RUM are considered to not be able to engage in self care because again it's a cognitive disorder disability. It's actually not

necessarily the case in all cases. UM, It's that their core is not strong enough or toned enough to hold themselves up while they put on a sock or tie their shoe or something like that. Yeah. Absolutely, So that's what occupational therapy does, is helped get that stuff in order so that they can start to excel and hit those goals sooner. And the occupation in this case is being a baby. That's your job. Uh. Social functioning, Um, it's usually a little less delayed. If you have a

baby with Down syndrome. You might be looking at a week or two sometimes for things like recognizing faces, looking at faces, smiling back at somebody, recognizing a smile, uh, communicating through just like gestures and you know that Google Gaga type of stuff. Uh. You know, could just be a week or two. Some kids, UH might have a greater reading ability than might be typical for someone uh their age or at their cognitive level. Um, the delays

and spoken language we've talked about a little bit. Uh, Their math and their number skills might be a little bit behind, usually about two years behind the reading skills. But if the reading skills are a little advanced, you know, it might not average out to be that much farther

behind than their peers. UH. And then you know, there's so many different ways kids learn these days, and that kids are being taught according to their needs, which is the biggest like breakthrough in education of the past, like a couple of decades, is recognizing that, like not every kid is in a box and learns the exact same way. And if you have down syndrome, then you have much better visual processing and visual learning skills than maybe with words.

So you're gonna be working with your teacher either, you know, sometimes a special classrooms, sometimes in just the regular classroom to work with that uh, work with that kid to you know, teach them a little differently. Yeah, I think um integrating classrooms together with people of different cognitive levels, especially you know, if you're now teaching people differently rather than making them all conformed to one thing, that seems like that would allow for integrated classrooms a lot more,

which I think is absolutely wonderful. Yeah, and you know, it happens in all kinds of ways. You talk to your school, see what kind of support that you can get. Uh. Sometimes it's just regular class for most of the day, and then they're specialists who come in for a couple of hours, maybe every day, sometimes a few days a week. Uh, if you're um, if you're able to, sometimes you can hire someone privately to to ass with stuff like that.

But it's it's just you know, be in good contact with your school and with your teachers, and it's just a different scene than it was when we were kids. Yeah, and um, you can thank your federal government for passing laws that banned discrimination in public schooling against cognitive disabilities. The Idea Act and then the A D A M both guarantee um quality public schooling for kids of different cognitive abilities and uh, in fact like tailored schooling depending

on their needs. Which hats off to that one, because I can tell you not every state would offer that if that weren't a law. No, they wouldn't took. I had one foot up on a soapbox. I'm gonna step back down. That was very close, very close. So let's take a break and I can shake it off. How about that? All right, We'll be right back. Okay, we're back, Chuck.

And before we get started, we just want to give a little shout out to our ongoing pledge drive for our friends, A Cooperative for Education, right, that's right, the great nonprofit in Guatemala that we've been working with for many years. Let us know that the stuff you should know. Army since we started working with him, has donated just about a hundred thousand dollars shy of a million bucks. So we want to help them get to that million

dollar mark. And there's a really quick easy way to donate, right. Yeah. They set up a page just for you to go donate. Um. It's Cooperative for Education dot org slash s y s K and it's a very painless process. Just chip in whatever you can and if everybody chips in whatever they can, then we'll come up with a bunch of money for COED to use to help kids in the mall to break the cycle of poverty. That's right. Should we talk about down syndrome testing, let's because it's a fairly new thing.

Um until I think that really kind of the eighties is when it really started to becoming much more common. You were you had no real idea whether your baby was going to have down syd um or not until they were born, even sometimes after they were born. That's right, But now that's different, right, they have different kinds of

tests that they can do. Is early is nine to thirteen weeks I think, yeah, there are a few different kinds of tests that can be used together to make this determination or separately or uh, well, I guess those

are the two ways. Um. The first thing that you might start with is a blood test, and this is between nine and thirteen weeks gestation, and that is measuring um plasma protein pregnancy plasma protein A, which is called p A p p A. And then something we've talked about before HC G human uh corean ganata tropin right, very nice. Um, After that, between eleven and thirteen weeks, you're gonna have an ultrasound that's gonna measure the back of the fetus's neck to see if there is any

unusual fluid collecting there. And then a doctor will take the ultrasound that first test, and they will see the maternal age and then say, all right, this may be the likelihood of you having a baby with Down syndrome, right, And if it's really high, they'll say, we we recommend you do more invasive testing, because that's the thing. A blood tests, they're just taking blood from the mom and checking it out and um, it's not very invasive, but it's also not quite as accurate as a more invasive

test like amniocentesis. Yeah, and also carries zero risk. The blood test yeah, UM, although it's risky if you don't like needles. Well, yeah, that's true. There's also another one called choreonic villas sampling or CVS and UM. One uses cells from the placenta. One takes a sample of amniotic fluid. The annual synesis does and UM. They're a little more invasive UM and because of that, there is a a slight chance that the mother will miscarry UM from the test.

And they always blame the tests forever, but now I think they're starting to think that there's a chance that in at least some of the cases the miscarriage would have happened, regardless that it actually wasn't the test that triggered it. UM and I saw everything from one in a hundred pregnancies miscarry after the test all the way to one in nine hundred in Alberta, which is apparently where you want to get these tests carried out. The

chances much much lower there, but they're they're accurate. That's why they perform these tests in the first place. That's right. And then there's a new test sort of the newest thing going. UH. It's UH non invasive. It's called in fact, noninvasive prenatal testing and IPT or screening n i p S, and that analyzes and this is really stuff. It analyzes fragments of DNA UH from the blood and some of that is going to come from the placenta, with the idea that placental cells or placenta cells d n A

is usually identical to that of the fetus. So it's a really simple way to screen for these abnormalities really early on, like ten weeks in. It's been around since about twenty of has become much more popular, but UM it has still not been cleared by the f d A, and the f d A even this year said don't just get that test, Like, if you want to get that test, you can get that test, but UM, just

don't look at those results alone, right. And the reason the FDA would say anything like that is because the point to these tests for the vast majority of people who get them are UM to determine whether they're going to keep this pregnancy or not. UM. There's a lot of concern among people who are UM part of the Down syndrome community that there's not a concerted effort to UM wipe out people with Down syndrome from the diversity

of you know, human types. Um. But that a million different individual UM decisions, all going the same way, can ultimately have the same effect. It really depends on where you are in the world. Again, that so I think. I call her Sophia Zang. I'm sorry, her name is Sarah Zang. She wrote that article in The Atlantic. Um, yeah, it was really wonderful. She um. I guess if an article about UM accidentally eradicating Down syndrome people from Earth could be wonderful, it definitely is. But um she uh.

She focused on Denmark, where there's something like I think of UM people who come back with a screening that says, yes, your baby is going to have Down Synemer has Down syndrome. Um, they abort, They choose to abort the pregnancy. And I

think it's even higher in Iceland. I think it's approaching a dent in Iceland, and as a result, the number of people with Down syndrome being born there's plummeting in I think two thousand and eighteen, Sarah Zang said in Denmark, eighteen people were born in the whole country with Down syndrome. Only seven of them were purposefully born. The other eleven had gotten false negatives and had carried on with the with the pregnancy, and you presume that some of them

probably would not have otherwise. I wonder, I don't know. I wonder what it is about that part of the world. I don't know, because if you read the article, she really goes on about how that that country in Scandinavia, I think in general, really kind of considers itself like very diverse, um, culturally and very inclusive and they're not like anti disabled, uh people or anything like that. But when it comes down to it, it's like, yeah, those

individual decisions, very private decision. Um, can they add up to that in in private and public? It's different? In private it's a completely different different game apparently. Yeah. And you know, we should also mention that when you get these tests done and they come back, you have that choice to make. But a lot of times it's also like uh, preparing yourself, like, yeah, I'm gonna go through with this pregnancy, and I want to know what to expect.

I want to prepare myself. I want to educate myself. I want to um, you know, there's there's money involved, which we're gonna talk about in a minute. So I want to get my finances UM squared away, or make sure I can have it squared away. I think the I guess we should talk a little bit about some of the statistics. UM. The abortion rate for Down syndrome

positive pregnancies UH is declining, you know, for sure. UM. It's it's kind of tough in the US because they don't have great stats apparently, but the CDC said between seventy nine and two thousand three UH the number of babies borns with babies born with Down syndrome increased by over that time frame, and al analysis found that termination rates for fetuses with Down syndrome was between UH sixty seven and eight and was declining. Yes, and that's the

US only. It doesn't appear to be declining in some of the Scandinavian countries for example. In other places in the world, I think Japan and China also have really high abortion rates for Down syndrome positive pregnancies. But the U s um there's a few factors at play for UM why they would be declining and the down syndrome

population would be increasing. UM. I think the national Down syndrome society says about today about people with Down syndrome are born each year, and there are, like I said, a few reasons why it's increasing. One is just because they've been brought of institutions and people have been able to see like, oh, yeah, these are human beings. They're different from me, but there's still human beings and they're the same as me in a lot more ways than

I realized. And also again anecdotally, they're amazing people to write. Absolutely, it's like, oh goodness, When I we just accept people as people, then everything gets better. Right. So that was that was just one factor. There's some others too. Uh yeah, one of them. Well, one factor is Hispanic women are much more likely to give birth regardless of whether or

not they have down uh syndrome, positive pregnancy happening right. Uh. And then another factor that can be complicated is that these screenings used to be something that you specifically request.

Now they're a little more standard, So that could just overall, you know, if you're just gonna have more screenings, that could increase the overall percentage of those positive results of people who still continue with that pregnancy and increase the total number of terminations, so I guess all the numbers

would be rising. Right. Also, the fact that people are giving birth later on average is increasing the rate of Down syndrome pregnancies to begin with, and that that means that just by by definition, more Down syndrome people are being born. So I think the number one factor is um being able to take people with Down syndrome to

the park now has just changed everything. Yeah, Um, I mentioned money, and there is you know, if there are more medical complications on average, Uh, then there are going to be more medical costs on average, and that is definitely something that people need to think about. I think among there's one study among children between birth and age four that at private insurance, the average medical care costs were about twelve times higher if you had Down syndrome.

And I think about families with a child with Down syndrome. Um had a family member that stopped their job, that stopped working to care for them full time, and about also said it caused the financial strain on their family, right, Um, And I mean there's plenty of other challenges as well. Um. One of the things about people with Down syndrome is that they age faster. Their bodies just age more quickly

than people without Down syndrome. UM statistic I saw is that a person aged forty with Down syndrome, UH, their bodies probably about five years older than their peers um and in the general population. And then at sixty, their bodies about twenty years older than the average sixty year

old in the general population. UM. And then one of the things that I think really kind of looms like a dark cloud over the Down syndrome community is that there's a really good chance that they will develop Alzheimer's, probably better than a fifty percent chance. I saw an editorial in the Washington Post that said a ninety percent chance either way. It's a really good likelihood that they're going to develop Alzheimer's. It's a big problem in the

Down syndrome community. Yeah, you sent me that stuff, but I didn't get a chance to look over the reasons why. But they they've kind of think they've isolated why right, Yeah, So that that twenty one chromosome, right, um, that you they often have three copies of that third copy actually boost production of what's called amloid beta, and amloid beta is one of the things that's responsible for the creation

of plaques on the brain that leads to Alzheimer's. So is another um substance called TAO, and people with Down syndrome produce more of this stuff, so their brains age faster, so they develop Alzheimer's at a much younger age, and they're they're much more likely too, because they're overproducing these proteins that create the plaque um and then also in UM. The Down syndrome population, Alzheimer's starts to present differently. It's not really memory loss or for forgetfulness that's like an

early signed. It's more and this is very said, reduced interest in being sociable, conversing or expressing thoughts, and decreased enthusiasm for usual activities. So there's a lot of people who are like, Okay, well, we're starting to work on Alzheimer's and testing new drugs, obviously we're going to include people with Down syndrome in those tests. And that is

absolutely not true. As a matter of fact, there was a test that the FDA explicitly excluded people with Down syndrome from for testing in Alzheimer's drug yes, and so there's there's a real movement to like start to include people with Down syndrome in these clinical trials, and it seems to be starting to to gain some traction. But it's just completely insensible to to just exclude the group that I guess, on average has the highest likelihood of

developing Alzheimer's of any other human group around. Yeah. So it's funny. When I was reading this stuff that Livia sent us, was getting um a little frustrated with like this study says this, and you know, we talked to parents that said this, and I was like, well, you know, has someone talked to people with Down syndrome and about how they feel? And good news is Livia held it till the end, and they've done just that uh many times.

In fact, that was she found one study in two thousand eleven, and this is of kids twelve and older with Down syndrome, and of them said they were happy with their lives. Uh. Seven percent said they liked who they were, uh, said they like how they look, said they love their family, and eight six percent said they could make friends easily. And then they asked it some sort of open didded questions just to get like, you know, real world answers, and uh, you know, most of these

kids did express some frustrations with their condition. Um, but it was parts of their condition and not their lives and not like this is my life is just so frustrating as is like this one part of my life is frustrating. And obviously a lot of this stuff in high school and like in puberty, they found that, you know, there were more reports of kids being sad who had

Down syndrome and not adjusting as well. And you know that's that's called puberty and being in high school and it's uh, probably especially rough if you have Down syndrome, but those are the changes that are going on with every kid, and so it may be a little more pronounced at that age. Yeah. And this, um, this is a really good study to skim. It's called Self Perceptions from People with Down Syndrome. It was led by Brian Skoto,

was from two thousand eleven. It's available for free online and it has just it's just chock full of quotes from the study. And he even says that they conducted the study because so many people are being presented with all of the downsides of Down syndrome when they're told that their child has Down syndrome, and do they want to keep the pregnancy, and he's like, we need to get other data that shows the full picture out there to people too. That's why he conducted this. But it's

a really great study to read. And one of the things that it kind of points out without overtly pointing out, is that people at Down syndrome generally are aware that they have Down syndrome, that they're different in some way, and yet despite that, this study shows that they're way happier on on this self first self reported study granted than the average person UM twelve and older in the

general population. Yeah, it's it's a really and you know, I hate that we saved this stuff to the end, but it's kind of a nice way to leave things. I think for sure. I want to shout out to other amazing well three other amazing people, um well four, five, five, But in three groups you're always in there. Um. One is Paul and Chris Sharoon Deforge. I believe when Paul died they both had Down syndrome. They both they have

been married for twenty five years. Pretty amazing. Um. There was a woman named Lisa White who was fifty back in two thousand sixteen. She had Down syndrome. It still doesn't believe she's around. But one of the things that was so amazing about two thousand six teams that Lisa turned fifty and her son Nick, her son Nick, who also has Down syndrome, turned twenty. That is really rare in the community. But it also shows like this woman has Down syndrome and she raised a child and she

was living independently. Also, yeah, uh, we can also shout out people like Sujiete de Sai, who was the first musician with Down syndrome to play at Carnegie Hall, has played in all fifty states thirteen countries. Uh, if you saw the great movie the Peanut Butter Falcon, really good movie is that I haven't seen. Yeah, it's really good. Has Shyla buff in it. But zach Um gotts again. I think his house pronounces the actor. He's been in

a bunch of stuff. But Peanut Butter fact and was certainly the highest profile movie and it's a really, really good, good flick. Okay, I'm gonna check it out. I mean, there's special Olympians who are on the national team, UM runaway models. Um arguably the famous person, the most famous person with Down syndrome, Chris Burke who played Quirky on Life goes On. Gotta shout out Chris Burke for sure.

Chris Burke, who played Quirky. Life Goes On was a very big show and a big deal as far as raising awareness, Like it seems like it just a sort of a trite thing to shout out the guy who played Quirky, but that show was. It was a game changer, and not only with just Down syndrome, but just awareness in how people viewed a lot of different kinds of disabilities. So he's worked with the National Down Syndrome Society h for a long time and it's just a great ambassador

for that group and speaking you gotta shout out. I also want to shout out Kayala McKeon, who manages grassroots advocacy for the National Down Syndrome Society. She also has Down syndrome herself. She was also the first registered lobbyists in America with Down syndrome. And we met her Chuck, because she came to our Atlanta show, Um where um, we had the National Down Syndrome Society come and then um, what was the name of the animal charity that you supported? Oh?

The local one? Yeah, Uh lifeline, Lifeline. That's right, That's what I was gonna say. So, UM, Kayla as a very cool person who is still at it from what I can tell, So shout out Kayla and everybody at the n d SS. Awesome. And then we have one more thing we just have to cover too. We can't

not mention it. That article from UM I think New Scientists that there's a study that was carried out and it was just among seven adult men with Down syndrome over six months, but they gave them uh pulses of geneta trope and releasing hormone g n r H and it improved their cognitive function over six months. That's like going from a thousand to add on the old school s a t that actually tested cognitive ability. Yeah. Yeah, when you put in that perspective, it's nuts giving them

one hormone. And again that's what actually increases and gets triggered when puberty hits, which also coincides with the decline and cognitive ability among Down syndrome people. So they may have figured out something really big, not just for Down syndrome people, but for Alzheimer's as well. We gotta shout out one more thing Okay, now where were running long?

But our very own Jerry sent this to us. Uh. Although it's called Jerry's Habima Theater h A B I m A uh, it is not our Jerry's Theater, just strictly coincidence. And I didn't know about this. This is in Atlanta. It's on tilly Mill Road, and it is a professional, uh theater company of actors and they all have special needs. And apparently there is a show that goes on I think it's this in March every year. It's coming up March nine through to save the date

for Cinderella, and tickets go on sale in January. And this is an all inclusive theater company that puts on these plays and it's looks like a wonderful thing. I think Jerry said that she had been and it's like one of the most fun best things uh and as well as being supportive, but just a really fun thing to do. So go check out Jerry's Habima Theater. Okay, I'm out of stuff for now. I got I mean, we could plug people all day, but I'm out of

stuff too. Okay, if you want to know more about down syndrome, that's really something that you should go out and learn more about and while you're doing that, in the meantime, I say it's time for listener mail. I'm going to call this UH pretty quick follow up from Fundamentalism. It was released today and as it happens, we start getting emails minutes after release, usually about forty five minutes after, although sometimes people jump the gun and email us during

an episode. Hey guys, thanks for the recent episode on fundamentalism. You put into words exactly what I've been going through for the past couple of years. I come from a very fundamentalist Catholic family and have been dealing with all the joy that comes from expressing a different viewpoint. My wife and I are both atheists, and this has been a point of contention with my family never since we

have decided to have a non religious wedding. UH. The tension is only increased since we have welcomed our daughter into the world and had to deal with my family's push to baptizer. The episode on fundamentalism is some very good points and definitely allowed me to look at the situation in a different light. The issue is closed mindedness and not necessarily religion. Appreciate all you guys do all the best that is from Jake. Awesome, thank you for that.

I can imagine that their wedding someone said God bless you two, and they were like, get out. You know, I'll take a guy bless you. I don't mind it. Uh when you sneeze her anytime. Anytime, if someone uh, I don't know, if my grocery store check her outer just says God bless you have a blessed day, I just say, you know what, thanks very much, because that's that's a kindness that they're bestowing upon me in their own way. Oh yeah, I'm like, you've never heard of

separation of church in public. You're fired as you're smashing a sheet cake into your mouth. That's exactly right, because those things don't make it out the door. Well, thanks a lot for sending us that email, Jake, And if you want to be like Jake, then you can send us an email to uh stuff podcast at iHeart radio dot com. Stuff you Should Know is a production of

I Heart Radio. For more podcasts my heart Radio, visit the i heart Radio app, Apple Podcasts, or wherever you listen to your favorite shows.