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How Down Syndrome Works · Stuff You Should Know

0:01
Speaker 1: Welcome to Stuff you Should Know, a production of I
0:04
Speaker 1: Heart Radio. Hey, and welcome to the podcast. I'm Josh,
0:13
Speaker 1: and there's Chuck and Jerry's here too, and this is
0:15
Speaker 1: a good old fashioned stuff you should know and it's serendipitous. Chuck,
0:20
Speaker 1: do you wanna know why? I know why? Oh you
0:23
Speaker 1: do here? Well, I think you're probably gonna say that
0:25
Speaker 1: we're recording this during Down Syndrome Month. That is correct, sir,
0:31
Speaker 1: although it will be released uh in November probably, Yeah,
0:37
Speaker 1: but still we're recording in down Syndrome Awareness Month. And
0:40
Speaker 1: I had no idea that October was down Syndrome Awared,
0:44
Speaker 1: So I think it's pretty cool that it worked out.
0:46
Speaker 1: Anytime it works out like that. That's right. We're we're
0:49
Speaker 1: recording way ahead of time. We're trying to bulk up
0:51
Speaker 1: for our Christmas holiday break that we like to take.
0:54
Speaker 1: That's right. I voted today early voting. If that shows
0:57
Speaker 1: you when this is congrats Chuck. And it felt good
1:00
Speaker 1: to just get or done, get it out of the way.
1:03
Speaker 1: And it feels good to do this episode because down
1:08
Speaker 1: syndrome is a condition that is really really really changed. Yeah,
1:14
Speaker 1: a lot like in our lifetime, like since since the
1:18
Speaker 1: nineteen seventies. Uh, and how it's how it's viewed, how
1:22
Speaker 1: it's accepted, and actual health outcomes, and a lot of
1:26
Speaker 1: those health outcomes actually have something to do with how
1:30
Speaker 1: it's been viewed and accepted, which is remarkable and sad,
1:34
Speaker 1: you know, if you're speaking historically. Yeah, yeah, for sure.
1:37
Speaker 1: But I mean that's just the headway that's been made
1:39
Speaker 1: things to in large part the disability rights movement. Yeah,
1:43
Speaker 1: people with Down syndrome have really benefited from that, and
1:45
Speaker 1: I'm happy it can be about that too, that's right. Um,
1:48
Speaker 1: we should say from the outset, we're talking about a
1:51
Speaker 1: group of human beings who, like any group of human beings,
1:54
Speaker 1: are um, incredibly varied in talent, skills, hopes, dreams, um,
2:00
Speaker 1: medical problems, facial features, all that stuff. So to say,
2:04
Speaker 1: like you know, down syndrome people all look a certain
2:07
Speaker 1: way or they're all happy all the time, is it's
2:11
Speaker 1: stereotypical and incorrect at the very least, you know. Um,
2:14
Speaker 1: So we just want to preface all of this that
2:16
Speaker 1: we're talking in in total generalities here about Down syndrome
2:21
Speaker 1: people in general. Just keep in mind this is not
2:23
Speaker 1: some pet group, like any group of humans is not
2:26
Speaker 1: some pat group, that's right. Although I will say every
2:29
Speaker 1: kid that I've ever met who had Down syndrome, which
2:31
Speaker 1: has been a handful, have been some of the most wonderful, loving,
2:36
Speaker 1: sweetest kids I've ever met in my life, every single one.
2:39
Speaker 1: And I met some other kids who are just jerks. Yeah,
2:43
Speaker 1: for sure, for sure, And again it's a it's a stereotype.
2:47
Speaker 1: It seems to be rooted in a lot of anecdotal evidence.
2:50
Speaker 1: But just just keep in mind, like the people with
2:53
Speaker 1: Down syndrome have rich inner lives, and they're happy, sometimes
2:56
Speaker 1: they're sad, sometimes they're angry, sometimes they're frustrated, sometimes they're
2:59
Speaker 1: glad sometimes Like again, they're human beings, so just don't
3:03
Speaker 1: forget that. UM. So again we caveated that by saying
3:06
Speaker 1: we're talking in general, and this doesn't apply to all
3:08
Speaker 1: people with Down syndrome, but there are some facial characteristics
3:11
Speaker 1: that the majority of people with Down syndrome typically have
3:15
Speaker 1: that um make them readily recognizable. I think, yeah, for sure.
3:20
Speaker 1: And we should preface this also by saying that at
3:23
Speaker 1: this point it's about I've seen between one and every
3:25
Speaker 1: seven and eight hundred babies born in the United States
3:30
Speaker 1: have down syndrome. So it's kind of somewhere in that range.
3:34
Speaker 1: And if we're talking typical physical characteristics, almond shaped eyes
3:39
Speaker 1: that typically slant upward. Um. Sometimes the net can be shorter, uh,
3:44
Speaker 1: the ears can be smaller um sometimes and some of
3:48
Speaker 1: these didn't even know. There can be tiny white spots
3:51
Speaker 1: in the irises of the eyes. Um. Hands and feet
3:55
Speaker 1: maybe a little smaller. And another interesting one increase a
4:00
Speaker 1: cross the palm of the hand. Did you ever heard
4:01
Speaker 1: of that? I had not? Uh. And then small pinky
4:05
Speaker 1: fingers that sometimes can curb towards the thumb uh and
4:09
Speaker 1: are generally a little shorter than average. Yeah. They also
4:13
Speaker 1: typically have UM less than average muscle tone, and loose
4:18
Speaker 1: joints frequently UM. And one of the things that I
4:21
Speaker 1: did not realize before but I do now after doing
4:24
Speaker 1: this research is that a lot of the stuff that
4:25
Speaker 1: I think people chalk up to cognitive impairment among down
4:29
Speaker 1: syndrome people are actually the result of UM motor impairment.
4:34
Speaker 1: They're actually like, like a really good example is speech.
4:38
Speaker 1: They tend to UM become verbal later than non down
4:42
Speaker 1: syndrome kids. UM, but it's not because they don't know
4:46
Speaker 1: how to talk. It's because their mouth muscles haven't developed
4:50
Speaker 1: enough to actually talk, and that can actually lead to
4:53
Speaker 1: a tremendous amount of frustration because you're a kid who
4:56
Speaker 1: is unable to express himself for herself, and you would think, like,
5:00
Speaker 1: you know this, this kid with Down syndrome can't talk
5:03
Speaker 1: yet because of cognitive inabilities, and that's just not the case.
5:07
Speaker 1: It's not the case. Um. There are also medical issues
5:10
Speaker 1: that are typically arise when you have Down syndrome, and
5:14
Speaker 1: this is just something that you know that parents need
5:17
Speaker 1: to know if if you have a baby with Down syndrome,
5:20
Speaker 1: you're gonna get a lot of information thrust upon you.
5:23
Speaker 1: And there's a lot of information medically out there. Um.
5:27
Speaker 1: One of the big ones is a congenital heart defect,
5:30
Speaker 1: which is about half the people with Down syndrome end
5:33
Speaker 1: up having this. About half might have some hearing and
5:37
Speaker 1: vision problems, um, which can range. You know, the vision
5:41
Speaker 1: can be anything from cataracts to just regular role near
5:44
Speaker 1: sighted and far sidedness to um uh strabismus which uh,
5:50
Speaker 1: that is something I've heard of before. That's when the
5:52
Speaker 1: eyes don't track together. Yeah. A lot of people used
5:55
Speaker 1: to call it being cross eyed. Yeah, exactly, um. And
5:59
Speaker 1: then I think later in like the puberty years, they
6:04
Speaker 1: found that sometimes they can lose their sense of smell.
6:06
Speaker 1: Is that right, Yes, which is fascinating, And we'll talk
6:10
Speaker 1: a lot of a little more about that later on
6:13
Speaker 1: because they may have found a way to treat that incidentally. Um,
6:17
Speaker 1: but yeah, there seems to be like a decline in
6:20
Speaker 1: ability to smell and in cognitive abilities around puberty. Okay. Uh.
6:27
Speaker 1: Thyroid problems can happen, um, usually hyperthyroidism, UH, tummy issues, UH,
6:34
Speaker 1: sleep apnea or asthma, like some kind of general breathing issues,
6:39
Speaker 1: childhood leukemia, and then another thing that we'll talk about
6:41
Speaker 1: a little bit more. Um. And it's very sad, but
6:44
Speaker 1: Alzheimer's disease can come pretty early sometimes, right. So what
6:50
Speaker 1: we just did, Chuck, Um, from what I understand is
6:52
Speaker 1: what a doctor will basically tell a parent when they
6:55
Speaker 1: find out that their child, or their fetus or their
6:58
Speaker 1: child in the womb, however you want to put it,
7:01
Speaker 1: Um almost certainly has Down syndrome. And I saw a
7:04
Speaker 1: Down syndrome rights activist who was like, yeah, I think
7:08
Speaker 1: if you gave an expecting parent a list of all
7:12
Speaker 1: the possible medical problems any person could have like no
7:17
Speaker 1: one would have a kid. So just bear in mind that,
7:20
Speaker 1: like there's actually more it can be. It can be
7:23
Speaker 1: more pronounced than this, it can be less pronounced than this.
7:26
Speaker 1: This is just kind of the Down syndrome population just
7:31
Speaker 1: tends to have these problems more than the general population.
7:34
Speaker 1: That's a good way to put it. Uh, And we'll
7:36
Speaker 1: talk about this a little bit more too. But your
7:38
Speaker 1: chances of having a baby with Down syndrome increases as
7:44
Speaker 1: you get older. So if you're twenty five years old,
7:47
Speaker 1: the chances about one in one thousand, two hundred and fifty,
7:51
Speaker 1: and then if you're forty plus that goes to about
7:55
Speaker 1: one and a hundred UM. But we said, now it
7:57
Speaker 1: shakes out to, you know, an average of about one
8:00
Speaker 1: and seven to eight hundred when you take the full
8:02
Speaker 1: you know, birthen age range, right exactly. I also saw
8:06
Speaker 1: that somebody who has already had a baby with Down
8:09
Speaker 1: syndrome is more likely to have another baby with Down syndrome.
8:13
Speaker 1: UM and you said something about the syndrome being tied
8:17
Speaker 1: to the mom's age. I saw something like nineties something
8:21
Speaker 1: percent of Down syndrome cases are the result of UM.
8:25
Speaker 1: The donation of an extra chromosome by the mom. And
8:29
Speaker 1: I didn't understand that UM until I saw it explained
8:32
Speaker 1: by UM an author from an Atlantic article It's really good.
8:37
Speaker 1: Her name is Sophia Zang, and she explained that UM.
8:41
Speaker 1: I didn't realize this either. UM. When a woman's eggs developed,
8:45
Speaker 1: they actually developed while she's a fetus, before she's even born.
8:49
Speaker 1: Her eggs are are set and they contain one set
8:53
Speaker 1: of twenty three chromosomes. You put that together with the
8:55
Speaker 1: twenty three chromosomes carried by a male sperm when they fertilize,
8:59
Speaker 1: you get a full forty six chromosomes. But over time,
9:03
Speaker 1: as the woman ages, the proteins that hold those chromosomes
9:07
Speaker 1: in place and lock them in where they should be UM,
9:11
Speaker 1: that can degrade, and so they can kind of move
9:13
Speaker 1: around or do different things, or get copied additionally accidentally.
9:17
Speaker 1: And that is the basis of Down syndrome. It's also
9:20
Speaker 1: called trizoni one, which means that there is a third
9:24
Speaker 1: copy of UM chromosome one. That is that's Down syndrome.
9:29
Speaker 1: That's what causes Down syndrome. It's the one thing all
9:32
Speaker 1: people with Down syndrome have in common. Almost all people
9:35
Speaker 1: I should say not. It doesn't even capture the full
9:38
Speaker 1: population of down syndrome if you think about it. Yeah,
9:41
Speaker 1: and like you said, the UM, I think in nine
9:44
Speaker 1: of the cases when you were born with that extra
9:49
Speaker 1: number twenty one chromosome, it is inherited from the mother. Uh.
9:54
Speaker 1: And that is it looks like usually as a result
9:56
Speaker 1: of the degradation of that protein that's holding everything together.
10:01
Speaker 1: So it's really I never knew that. It's uh, it's
10:03
Speaker 1: pretty amazing that we know so specifically how this stuff
10:08
Speaker 1: works now. I think it was Chromosome twenty one was
10:11
Speaker 1: the second human chromosome that was fully sequenced as part
10:16
Speaker 1: of the Human Genome Project, and it's that extra chromosome.
10:20
Speaker 1: Is that number twenty one that's uh, that causes all
10:24
Speaker 1: of it. Yeah, I saw that. It's one of the
10:26
Speaker 1: smallest chromosomes, if not the smallest chromosome, but it's responsible
10:31
Speaker 1: for UM encoding anywhere from I saw two hundred to
10:35
Speaker 1: four hundred different genes, and some of those genes expressed
10:39
Speaker 1: different proteins UM that can be used in more than
10:43
Speaker 1: one reaction. There's one called nuclear hormone receptor interacting protein.
10:49
Speaker 1: Awesome name probably not a band name though I don't
10:52
Speaker 1: think so too much. It's involved in twenty different functions
10:56
Speaker 1: in the human body, just that one protein that's expressed
10:59
Speaker 1: by that by one of those two D four hundred
11:01
Speaker 1: genes on chromosome. So when you put all that together
11:04
Speaker 1: and you realize how many proteins are involved in how
11:06
Speaker 1: many different functions, that's how you get kind of this
11:08
Speaker 1: galaxy of symptoms that make up Down syndrome essentially. Yeah,
11:13
Speaker 1: and you mentioned that the trisomy twenty one doesn't even
11:16
Speaker 1: cover the full range of Down syndrome. That is because
11:20
Speaker 1: that's about the other five percent come from two other
11:24
Speaker 1: ways that you can have Down syndrome. One is translocation down,
11:29
Speaker 1: and that is when there is either a piece or
11:32
Speaker 1: a part or either a whole extra copy of number
11:36
Speaker 1: twenty one that's out there, but instead of being distinct
11:39
Speaker 1: and separate, it's attached or translocated to a different chromosome.
11:44
Speaker 1: And that's the accounts for three percent. And then uh,
11:47
Speaker 1: and this is I know a kid, a friend of
11:50
Speaker 1: our family who has mosaic down. That's the third type
11:53
Speaker 1: and that is accounts for the other two percent. And
11:56
Speaker 1: that is when um, some of the cells in your
11:59
Speaker 1: body do have the three copies of the chromosome twenty one,
12:03
Speaker 1: but others have the two, which is what you usually have.
12:07
Speaker 1: So it's sort of a mix and they're all kind
12:10
Speaker 1: of similar. But if you do have mosaic down, then
12:12
Speaker 1: you tend to generally have fewer of the typical features
12:16
Speaker 1: that you think of when you think of Down syndrome. Yeah,
12:19
Speaker 1: they represented by a percentage of cells in your body
12:22
Speaker 1: that have the third chromosome, and that that percentage reflects
12:26
Speaker 1: that UM. Also that mosaic um down syndrome occurs after
12:32
Speaker 1: the egg is fertilized, so it occurs during fetal development,
12:36
Speaker 1: like a cell divides um differently, and that that third
12:40
Speaker 1: chromosome is generated in some of the cells. That's why
12:43
Speaker 1: some of the cells go on to divide. They didn't
12:45
Speaker 1: have that that um that different division. They had regular
12:49
Speaker 1: too chromosome or two pair chromosome division. Right. So UM,
12:53
Speaker 1: that explains one of the mysteries I think behind Down syndrome,
12:59
Speaker 1: which is how, um, you could have identical twins and
13:02
Speaker 1: just one of them has Down syndrome and the other
13:04
Speaker 1: one doesn't. Oh yeah, did you just figure that out?
13:10
Speaker 1: Like is this breaking news from you? Oh? I see, Uh,
13:14
Speaker 1: maybe maybe it's my it's my little contribution to the field.
13:19
Speaker 1: All right. I think that's a good sort of general overview.
13:21
Speaker 1: Maybe we should take a break and we'll talk a
13:23
Speaker 1: little bit about I'm just gonna go and say it,
13:26
Speaker 1: the shameful history of how humans dealt with people with
13:30
Speaker 1: Down syndrome. Sorry, geh. So, if you're talking human history,
14:00
Speaker 1: there has always been it seems like Down syndrome. Um,
14:04
Speaker 1: you you dug up this was that like a clay
14:08
Speaker 1: sculpture or something. I didn't dig it up, I think
14:12
Speaker 1: in archaeol just did. But yes, I found it on
14:15
Speaker 1: the internet. That counts. Friend, dug it up on the internet.
14:18
Speaker 1: That was from five d CE. That it very much
14:21
Speaker 1: seems to be someone with Down syndrome. Uh. There are
14:24
Speaker 1: also been other various works of art. There's a very
14:27
Speaker 1: famous Flemish painting called the Adoration of the Christ Child
14:31
Speaker 1: from fifteen fifteen, where there's an angel, quite a few angels,
14:34
Speaker 1: but one of them seems to have the physical characteristics
14:37
Speaker 1: that we associate with down. So it has been there
14:41
Speaker 1: for a long time, but very sadly if you were,
14:46
Speaker 1: I mean, it wasn't even that long ago. Certainly if
14:48
Speaker 1: you were, you know, really far back history, your chances
14:52
Speaker 1: of living with Down was uh, pretty low. Um for
14:56
Speaker 1: you know, living any any kind of life. If you
14:59
Speaker 1: lived at all, it's a very short lifespan back in
15:01
Speaker 1: those days, and then if you did manage to live,
15:05
Speaker 1: you were probably sort of cast out of society and institutionalized.
15:10
Speaker 1: And this kind of stuff was going on up until
15:13
Speaker 1: like the late sixties and early seventies. Yeah, I think
15:16
Speaker 1: in nineteen sixty in the United States, if you had
15:19
Speaker 1: Down syndrome, your life expectancy was ten years old. And
15:23
Speaker 1: again any time you hear like, oh well, the people
15:26
Speaker 1: in olden days just lived to be thirty five. Now,
15:29
Speaker 1: so many children died at birth that its skewed the
15:33
Speaker 1: average life expectancy that far downward. And that's understandable, especially
15:38
Speaker 1: you know in pre medical days, um, because so many
15:42
Speaker 1: I think like half are born with congenital heart defects
15:46
Speaker 1: and that you have to go undergo surgery starting about
15:48
Speaker 1: three days after you're born when you have something like
15:50
Speaker 1: that to correct it, and it takes multiple surgeries. And
15:53
Speaker 1: before the advent of that, yeah, that was you were
15:56
Speaker 1: not going to live very long as a baby because
15:58
Speaker 1: you had a congenital defect and no one had any
16:01
Speaker 1: idea what that even was, let alone how to treat it. Yeah,
16:04
Speaker 1: it's UM. If you wonder where it gets his name.
16:07
Speaker 1: In eighteen sixty two, there was a English physician named
16:10
Speaker 1: John langdon Down that's where the name comes from, who
16:14
Speaker 1: first identified it. UH. And it was sort of an
16:17
Speaker 1: important distinction at the time because it did make a
16:19
Speaker 1: distinction between UM, what at the time they categorized as
16:24
Speaker 1: a mental disability and an actual sort of well, you know,
16:28
Speaker 1: it took a long time before they identified the chromosome issue,
16:33
Speaker 1: but UM, it was a big distinction at the time,
16:35
Speaker 1: and for many many years they UH in this. You know,
16:39
Speaker 1: Olivia helped us put this together, points out that this
16:42
Speaker 1: is very offensive in many different ways. But the term
16:45
Speaker 1: mongoloid was used UH, and this could be an interesting
16:49
Speaker 1: short stuff. It was based on the idea that if
16:52
Speaker 1: you were white and you had Down syndrome, then you
16:56
Speaker 1: might resemble someone who is East Asian or what they
17:00
Speaker 1: referred to as Mongolian back then, which was and this
17:04
Speaker 1: is the part that I think would be interesting is
17:06
Speaker 1: Johan Blueman Box racial classification UH system, which was Caucasian, Mongolian,
17:14
Speaker 1: which was East Asian Malayan, which is Southeast Asian, Ethiopian,
17:19
Speaker 1: which was basically any part of Africa, and then American,
17:23
Speaker 1: which meant indigenous Americans. Um. Obviously that's super outdated, but
17:28
Speaker 1: I think it could make for an interesting, like historical
17:31
Speaker 1: short stuff. I think it might actually be its own
17:33
Speaker 1: um episode because I was thinking into it. Yeah, and
17:36
Speaker 1: apparently it's still generally respected even though it is the
17:41
Speaker 1: terminology is outdated, and of course there's way more um
17:44
Speaker 1: subcategories of people, and the idea of race is even
17:47
Speaker 1: considered a social construct now. But Bluemenbach is considered the
17:51
Speaker 1: first scientist to purposefully divorce racism from science. Yeah, so
17:56
Speaker 1: as racist as you know, calling someone Mongolian out seems
18:01
Speaker 1: um like his purpose was to prevent that, to to
18:06
Speaker 1: just create a specifically scientific approach that's not racist to
18:11
Speaker 1: um two different types of people. Yeah, maybe we should
18:14
Speaker 1: tackle that. The long and short of this, though, is
18:17
Speaker 1: that the term mongoloyd was around, Like I remember hearing
18:21
Speaker 1: that word when I was a kid. Yeah. That was
18:23
Speaker 1: Divo's first single in Yeah, that was the first single
18:27
Speaker 1: they ever released, was Mongoloyd. I love Devo? Yeah, I mean,
18:31
Speaker 1: otherwise they're they're pretty great, good feeling what a song. Yeah.
18:36
Speaker 1: The more I listen to them more, I'm like, these
18:38
Speaker 1: guys were just amazing. And then to think of like
18:41
Speaker 1: them performing in the late seventies and early eighties and
18:44
Speaker 1: coming up with this, it's like they weren't working off
18:47
Speaker 1: of anybody else's stuff. It seemed like they were their
18:49
Speaker 1: own group. This good kids music too. By the way,
18:51
Speaker 1: if you're a parent and you have a young kid
18:54
Speaker 1: and you want to introduce him to cool music, like
18:56
Speaker 1: something about Diva like really made my daughter dance or
19:00
Speaker 1: early on, oh do whip it maybe the best song
19:03
Speaker 1: to dance to and definitely to run to as well.
19:07
Speaker 1: I have one more little music tidbit um uh music
19:12
Speaker 1: titles that were unkind to UM people with down syndrome, Uh,
19:16
Speaker 1: black Eyed Peas. Do you know the UM song Let's
19:19
Speaker 1: Get It Started? Yeah, that was a re record. The
19:23
Speaker 1: NBA came and said, hey, can you re record your
19:26
Speaker 1: song Let's get are worded? Which is the original title
19:29
Speaker 1: of it? Oh? Really yes, And they re recorded it
19:34
Speaker 1: for the NBA and ended up releasing it as a single.
19:36
Speaker 1: It became a huge hit. But that is not Let's
19:38
Speaker 1: Get It Started as not the original title of that
19:41
Speaker 1: song or original lyrics. That's true, and that was the
19:46
Speaker 1: two thousand three that is a black eye on the
19:49
Speaker 1: black eyed peas sor uh. So that term, the term
19:58
Speaker 1: mongoloid um, was actually sent to the World Health Organization
20:02
Speaker 1: in nineteen sixty uh from the nation of Mongolia and said, hey,
20:07
Speaker 1: maybe you shouldn't be using this word anymore. But it
20:10
Speaker 1: took a little while for it to catch on that
20:11
Speaker 1: we shouldn't be using that word. Uh. And now we
20:14
Speaker 1: just say down syndrome like we should. Yeah, it's not
20:17
Speaker 1: a downy or a down person or anything like that's
20:19
Speaker 1: a person with down syndrome like any any other condition. UM.
20:23
Speaker 1: And that's also why because it's named after John Langdon
20:25
Speaker 1: down why it's a capital D lower case S when
20:29
Speaker 1: you spell it out. Yeah, And you know a lot
20:31
Speaker 1: of people say downs, which is incorrect. But I have
20:34
Speaker 1: seen that that has kind of become kind of accepted,
20:38
Speaker 1: and I think it felt a little more like resigned
20:40
Speaker 1: to than except you can see that so, Chuck. One
20:45
Speaker 1: of the things that UM is just a real blemish
20:48
Speaker 1: on the history of humanity, and I think UM, I
20:51
Speaker 1: hope becomes even more so as we progress as a species. UM.
20:55
Speaker 1: People with down syndrome. Uh, we're targeted for you an assists.
21:00
Speaker 1: Like right out of the gate, they were an obvious
21:03
Speaker 1: population to target. They were considered um completely dependent on society,
21:09
Speaker 1: a burden to their families, UM. And the premise was
21:12
Speaker 1: that you either needed to institutionalize them essentially from birth,
21:17
Speaker 1: like back in the day not too long ago, when
21:20
Speaker 1: you figured out that your baby had Down syndrome, you said,
21:25
Speaker 1: here you go, state, thank you for taking care of
21:27
Speaker 1: this child for the rest of his or her life.
21:29
Speaker 1: We're washing our hands of him or her or they
21:32
Speaker 1: were um sterilized against their will or both. Yeah, it's
21:39
Speaker 1: very sad and shameful. And uh, I mean that that
21:42
Speaker 1: that's sort of what we've seen in time and time
21:44
Speaker 1: again of any kind of UM mental issues that people had.
21:49
Speaker 1: It was just like, you know, put them behind closed
21:51
Speaker 1: doors where everyone else can just not think about it anymore. Right,
21:56
Speaker 1: So that's I mean, they were neglected, They were probably beaten.
21:59
Speaker 1: In many K races, they had no access to medical
22:02
Speaker 1: care or any kind of stimulation. They were just basically
22:06
Speaker 1: left to rot for the for the sole reason that
22:09
Speaker 1: they had Down syndrome. And again this was based on
22:12
Speaker 1: really faulty information the idea that they would never speak,
22:16
Speaker 1: that they couldn't walk correctly, they would never be able to,
22:19
Speaker 1: um uh perform any kind of like socially productive work
22:24
Speaker 1: or anything like that. There they were just to be
22:27
Speaker 1: left in these institutions. And finally, in the sixties, the
22:30
Speaker 1: whole de institutionalization movement that really started to take hold
22:34
Speaker 1: that we kind of referenced in the rosen hand Han
22:37
Speaker 1: experiment episode, UM that that benefited people with Down syndrome too,
22:43
Speaker 1: And so they were released from the institutions and were
22:46
Speaker 1: now raised in at home in the community, and almost
22:50
Speaker 1: immediately the life expectancy for Down syndrome people skyrocketed because
22:55
Speaker 1: it turned out the greatest risk factor for death for
22:58
Speaker 1: Down syndrome person was being institutionalized. That's how mistreated they were. Man,
23:03
Speaker 1: I mean that that's hard to even uh swallow, you know, like, hey,
23:08
Speaker 1: it turns out if we care for people and treat
23:11
Speaker 1: them as human beings and give them love and healthcare,
23:15
Speaker 1: then they'll thrive and survive. It's really sad, but it's
23:20
Speaker 1: it's actually, you know, since the nineteen seventies, um, it's
23:25
Speaker 1: not sad, it's been wonderful. By two thousand seven, Americans
23:29
Speaker 1: with Down syndrome live an average of forty seven. Um.
23:33
Speaker 1: I've seen that number average go as high as sixty.
23:37
Speaker 1: I think there was an Australian study that edited about
23:39
Speaker 1: sixty Between nineteen seventy nine and two thousand three, the
23:44
Speaker 1: rate of death within the first year dropped from eight
23:46
Speaker 1: point five percent to five percent. And the quality of
23:50
Speaker 1: life has just been there's been a huge sea change. Uh.
23:54
Speaker 1: And we're like I said, we're talking within our lifetime.
23:57
Speaker 1: This was like pre nineteen eighties. Keep we're still being
24:00
Speaker 1: institutionalized u from infancy infancy sometimes so they were you know,
24:07
Speaker 1: not necessarily banned, but just sort of weren't brought out
24:10
Speaker 1: in public, weren't taken to the movies, weren't taken to
24:12
Speaker 1: parks and things like that. Even in Benjamin Spock, you know,
24:19
Speaker 1: the very famous doctor Spock who wrote the famous baby book.
24:23
Speaker 1: This was a you know, supposedly progressive person at the time,
24:27
Speaker 1: said that, uh, mongoloid babies should immediately be institutionalized, since
24:32
Speaker 1: if the infant merely exists at a level that is
24:35
Speaker 1: hardly human, it is much better for the other children
24:38
Speaker 1: and the parents to have him cared for elsewhere. Yeah,
24:42
Speaker 1: and This is Dr Spock, who was considered extremely progressive
24:46
Speaker 1: and arguably the person who ruined the baby boomer generation
24:49
Speaker 1: by giving poor advice to their parents. But regardless, he
24:53
Speaker 1: was a very progressive voice. And this is what he
24:55
Speaker 1: was saying. That's how widely UM assumed this. This, this
25:01
Speaker 1: whole idea about down syndrome people was that late in
25:05
Speaker 1: in the century. So UM Again, in the sixties and seventies,
25:09
Speaker 1: the disability rights movement comes along and says, hey, these
25:11
Speaker 1: people are being mistreated for no good reason. If you, UM,
25:15
Speaker 1: you know, if you visit with somebody who has been
25:18
Speaker 1: raised at home with parents who send them to school
25:22
Speaker 1: and care about their simulation, they're actually like their i
25:26
Speaker 1: Q starts to increase tremendously, I think. UM. There was
25:30
Speaker 1: a study from nine that found that UM down syndrome
25:35
Speaker 1: people raised in institutions had an average i Q of
25:38
Speaker 1: twenty to thirty UM and then those raised at home
25:42
Speaker 1: with stimulation had i Q of about fifty five. And
25:47
Speaker 1: as people kind of change their perception, or I should says,
25:50
Speaker 1: down syndrome people changed other people's perception more and more.
25:54
Speaker 1: They started to graduate from high school, graduate from college,
25:58
Speaker 1: get driver's licensees, get married UM and just start living
26:03
Speaker 1: more and more normal lives. Again, depending on the amount
26:07
Speaker 1: of UM self sufficiency they're able to maintain. Some people
26:11
Speaker 1: with down syndromes live with their parents for the rest
26:13
Speaker 1: of their lives. Some people have an apartment with their buddies,
26:16
Speaker 1: some live alone. And it's just again, it's a spectrum
26:19
Speaker 1: of what they're capable of or even what they are
26:21
Speaker 1: interested in. Yeah, and I was about to say, I'd
26:24
Speaker 1: love to see that study today because that was all
26:26
Speaker 1: the way in ninety nine. But thankfully you're not going
26:29
Speaker 1: to get that study today because they're no longer institutionalized
26:33
Speaker 1: like that. Yeah, there's one part of that study that
26:36
Speaker 1: I bet that they could just do i Q studies
26:39
Speaker 1: and a bet that would be even higher. Is what
26:40
Speaker 1: I was trying to get to. If it was a
26:42
Speaker 1: good study, you could reproduce it using the same methodology
26:46
Speaker 1: today and you'd be able to compare the institutionalized to
26:49
Speaker 1: that you know, stimulated at home. Yeah, that's a good point.
26:52
Speaker 1: So let's talk a little bit about UH. Development and
26:56
Speaker 1: this is sort of all over the map intellectual if
26:59
Speaker 1: it's development social development, and again these are generalizations, UH
27:04
Speaker 1: and you know you'll see in a lot of cases
27:06
Speaker 1: that UH, kids with Down syndrome can be behind in
27:10
Speaker 1: some ways by just a little bit, sometimes behind by
27:13
Speaker 1: a little bit more, sometimes ahead in other areas. UH.
27:17
Speaker 1: And it starts at birth basically UM in infancy, things
27:22
Speaker 1: like feeding UH. And this is because of the muscle
27:25
Speaker 1: tone issues UM and hypermobility. Things like UM feeding during
27:30
Speaker 1: infancy can cause problems or you know, problems with feeding
27:34
Speaker 1: which can lead to constipation problems. UH. They may be
27:37
Speaker 1: a little smaller physically at first and be a little
27:41
Speaker 1: slower on the growth curve uh than their peers typically
27:44
Speaker 1: develop UM. But as they you know, they kind of
27:47
Speaker 1: catch up as they get older, and that generally improves
27:50
Speaker 1: and UM those developmental milestones you know, feeding themselves, dressing
27:55
Speaker 1: and stuff like that. Using the toilet you mentioned speaking,
27:59
Speaker 1: they might happen a little bit later, right, I saw
28:02
Speaker 1: it explained as they they can and do develop skills
28:06
Speaker 1: throughout their lives, but they just reach goals at a
28:08
Speaker 1: different pace, and all kids reach goals at different paces.
28:13
Speaker 1: So it's just about setting expectations, is apparent. One of
28:17
Speaker 1: the things that is available now that is really helping
28:20
Speaker 1: to increase not just life expectancy but also quality of
28:23
Speaker 1: life among people with Down synd room is occupational therapy.
28:27
Speaker 1: They've figured out that basically the moment that you realize
28:29
Speaker 1: that your child has Down syndrome after they're born, UM,
28:32
Speaker 1: you want to start different kinds of therapy. I think
28:35
Speaker 1: occupational to start because it's so hands on and physical.
28:39
Speaker 1: But UM, some of the things I saw that you
28:41
Speaker 1: can do at home because they have smaller fingers and
28:44
Speaker 1: smaller hands and pinkies that curve on average. UM, one
28:48
Speaker 1: of the things you want to do is help them
28:50
Speaker 1: learn to hold a pencil properly or you know, manipulate
28:54
Speaker 1: things with their hands better. So you have them play
28:56
Speaker 1: with plato or UM paste areos to UM like UM
29:03
Speaker 1: construction paper or something like that. Stuff that like you
29:06
Speaker 1: you use like the very fine motor skills for and
29:09
Speaker 1: then also ones that require like big motor skills like
29:13
Speaker 1: UM I saw. Focusing on your core is really important
29:16
Speaker 1: because there's a lot of people with downs RUM are
29:19
Speaker 1: considered to not be able to engage in self care
29:22
Speaker 1: because again it's a cognitive disorder disability. It's actually not
29:26
Speaker 1: necessarily the case in all cases. UM, It's that their
29:30
Speaker 1: core is not strong enough or toned enough to hold
29:33
Speaker 1: themselves up while they put on a sock or tie
29:36
Speaker 1: their shoe or something like that. Yeah. Absolutely, So that's
29:39
Speaker 1: what occupational therapy does, is helped get that stuff in
29:42
Speaker 1: order so that they can start to excel and hit
29:44
Speaker 1: those goals sooner. And the occupation in this case is
29:47
Speaker 1: being a baby. That's your job. Uh. Social functioning, Um,
29:54
Speaker 1: it's usually a little less delayed. If you have a
29:57
Speaker 1: baby with Down syndrome. You might be looking at a
30:00
Speaker 1: week or two sometimes for things like recognizing faces, looking
30:04
Speaker 1: at faces, smiling back at somebody, recognizing a smile, uh,
30:09
Speaker 1: communicating through just like gestures and you know that Google
30:12
Speaker 1: Gaga type of stuff. Uh. You know, could just be
30:16
Speaker 1: a week or two. Some kids, UH might have a
30:19
Speaker 1: greater reading ability than might be typical for someone uh
30:23
Speaker 1: their age or at their cognitive level. Um, the delays
30:26
Speaker 1: and spoken language we've talked about a little bit. Uh,
30:29
Speaker 1: Their math and their number skills might be a little
30:31
Speaker 1: bit behind, usually about two years behind the reading skills.
30:34
Speaker 1: But if the reading skills are a little advanced, you know,
30:37
Speaker 1: it might not average out to be that much farther
30:39
Speaker 1: behind than their peers. UH. And then you know, there's
30:43
Speaker 1: so many different ways kids learn these days, and that
30:46
Speaker 1: kids are being taught according to their needs, which is
30:50
Speaker 1: the biggest like breakthrough in education of the past, like
30:53
Speaker 1: a couple of decades, is recognizing that, like not every
30:57
Speaker 1: kid is in a box and learns the exact same way.
31:00
Speaker 1: And if you have down syndrome, then you have much
31:04
Speaker 1: better visual processing and visual learning skills than maybe with words.
31:09
Speaker 1: So you're gonna be working with your teacher either, you know,
31:12
Speaker 1: sometimes a special classrooms, sometimes in just the regular classroom
31:16
Speaker 1: to work with that uh, work with that kid to
31:19
Speaker 1: you know, teach them a little differently. Yeah, I think
31:22
Speaker 1: um integrating classrooms together with people of different cognitive levels,
31:26
Speaker 1: especially you know, if you're now teaching people differently rather
31:30
Speaker 1: than making them all conformed to one thing, that seems
31:32
Speaker 1: like that would allow for integrated classrooms a lot more,
31:36
Speaker 1: which I think is absolutely wonderful. Yeah, and you know,
31:38
Speaker 1: it happens in all kinds of ways. You talk to
31:40
Speaker 1: your school, see what kind of support that you can get. Uh.
31:44
Speaker 1: Sometimes it's just regular class for most of the day,
31:47
Speaker 1: and then they're specialists who come in for a couple
31:50
Speaker 1: of hours, maybe every day, sometimes a few days a week. Uh,
31:54
Speaker 1: if you're um, if you're able to, sometimes you can
31:57
Speaker 1: hire someone privately to to ass with stuff like that.
32:01
Speaker 1: But it's it's just you know, be in good contact
32:04
Speaker 1: with your school and with your teachers, and it's just
32:06
Speaker 1: a different scene than it was when we were kids. Yeah,
32:09
Speaker 1: and um, you can thank your federal government for passing
32:11
Speaker 1: laws that banned discrimination in public schooling against cognitive disabilities.
32:16
Speaker 1: The Idea Act and then the A D A M
32:19
Speaker 1: both guarantee um quality public schooling for kids of different
32:24
Speaker 1: cognitive abilities and uh, in fact like tailored schooling depending
32:29
Speaker 1: on their needs. Which hats off to that one, because
32:32
Speaker 1: I can tell you not every state would offer that
32:35
Speaker 1: if that weren't a law. No, they wouldn't took. I
32:38
Speaker 1: had one foot up on a soapbox. I'm gonna step
32:40
Speaker 1: back down. That was very close, very close. So let's
32:43
Speaker 1: take a break and I can shake it off. How
32:45
Speaker 1: about that? All right, We'll be right back. Okay, we're back, Chuck.
33:14
Speaker 1: And before we get started, we just want to give
33:16
Speaker 1: a little shout out to our ongoing pledge drive for
33:19
Speaker 1: our friends, A Cooperative for Education, right, that's right, the
33:23
Speaker 1: great nonprofit in Guatemala that we've been working with for
33:26
Speaker 1: many years. Let us know that the stuff you should know.
33:30
Speaker 1: Army since we started working with him, has donated just
33:33
Speaker 1: about a hundred thousand dollars shy of a million bucks.
33:36
Speaker 1: So we want to help them get to that million
33:38
Speaker 1: dollar mark. And there's a really quick easy way to donate, right. Yeah.
33:44
Speaker 1: They set up a page just for you to go donate. Um.
33:47
Speaker 1: It's Cooperative for Education dot org slash s y s
33:51
Speaker 1: K and it's a very painless process. Just chip in
33:53
Speaker 1: whatever you can and if everybody chips in whatever they can,
33:56
Speaker 1: then we'll come up with a bunch of money for
33:58
Speaker 1: COED to use to help kids in the mall to
34:00
Speaker 1: break the cycle of poverty. That's right. Should we talk
34:03
Speaker 1: about down syndrome testing, let's because it's a fairly new thing.
34:08
Speaker 1: Um until I think that really kind of the eighties
34:12
Speaker 1: is when it really started to becoming much more common.
34:15
Speaker 1: You were you had no real idea whether your baby
34:19
Speaker 1: was going to have down syd um or not until
34:20
Speaker 1: they were born, even sometimes after they were born. That's right,
34:23
Speaker 1: But now that's different, right, they have different kinds of
34:25
Speaker 1: tests that they can do. Is early is nine to
34:28
Speaker 1: thirteen weeks I think, yeah, there are a few different
34:31
Speaker 1: kinds of tests that can be used together to make
34:34
Speaker 1: this determination or separately or uh, well, I guess those
34:38
Speaker 1: are the two ways. Um. The first thing that you
34:41
Speaker 1: might start with is a blood test, and this is
34:43
Speaker 1: between nine and thirteen weeks gestation, and that is measuring
34:47
Speaker 1: um plasma protein pregnancy plasma protein A, which is called
34:53
Speaker 1: p A p p A. And then something we've talked
34:56
Speaker 1: about before HC G human uh corean ganata tropin right,
35:02
Speaker 1: very nice. Um, After that, between eleven and thirteen weeks,
35:05
Speaker 1: you're gonna have an ultrasound that's gonna measure the back
35:08
Speaker 1: of the fetus's neck to see if there is any
35:12
Speaker 1: unusual fluid collecting there. And then a doctor will take
35:16
Speaker 1: the ultrasound that first test, and they will see the
35:20
Speaker 1: maternal age and then say, all right, this may be
35:23
Speaker 1: the likelihood of you having a baby with Down syndrome, right,
35:26
Speaker 1: And if it's really high, they'll say, we we recommend
35:30
Speaker 1: you do more invasive testing, because that's the thing. A
35:33
Speaker 1: blood tests, they're just taking blood from the mom and
35:36
Speaker 1: checking it out and um, it's not very invasive, but
35:39
Speaker 1: it's also not quite as accurate as a more invasive
35:43
Speaker 1: test like amniocentesis. Yeah, and also carries zero risk. The
35:47
Speaker 1: blood test yeah, UM, although it's risky if you don't
35:51
Speaker 1: like needles. Well, yeah, that's true. There's also another one
35:55
Speaker 1: called choreonic villas sampling or CVS and UM. One uses
36:00
Speaker 1: cells from the placenta. One takes a sample of amniotic fluid.
36:04
Speaker 1: The annual synesis does and UM. They're a little more
36:08
Speaker 1: invasive UM and because of that, there is a a
36:10
Speaker 1: slight chance that the mother will miscarry UM from the test.
36:16
Speaker 1: And they always blame the tests forever, but now I
36:19
Speaker 1: think they're starting to think that there's a chance that
36:22
Speaker 1: in at least some of the cases the miscarriage would
36:25
Speaker 1: have happened, regardless that it actually wasn't the test that
36:27
Speaker 1: triggered it. UM and I saw everything from one in
36:30
Speaker 1: a hundred pregnancies miscarry after the test all the way
36:33
Speaker 1: to one in nine hundred in Alberta, which is apparently
36:36
Speaker 1: where you want to get these tests carried out. The
36:39
Speaker 1: chances much much lower there, but they're they're accurate. That's
36:43
Speaker 1: why they perform these tests in the first place. That's right.
36:47
Speaker 1: And then there's a new test sort of the newest
36:48
Speaker 1: thing going. UH. It's UH non invasive. It's called in fact,
36:53
Speaker 1: noninvasive prenatal testing and IPT or screening n i p S,
36:58
Speaker 1: and that analyzes and this is really stuff. It analyzes
37:01
Speaker 1: fragments of DNA UH from the blood and some of
37:05
Speaker 1: that is going to come from the placenta, with the
37:08
Speaker 1: idea that placental cells or placenta cells d n A
37:12
Speaker 1: is usually identical to that of the fetus. So it's
37:16
Speaker 1: a really simple way to screen for these abnormalities really
37:19
Speaker 1: early on, like ten weeks in. It's been around since
37:22
Speaker 1: about twenty of has become much more popular, but UM
37:27
Speaker 1: it has still not been cleared by the f d A,
37:30
Speaker 1: and the f d A even this year said don't
37:33
Speaker 1: just get that test, Like, if you want to get
37:35
Speaker 1: that test, you can get that test, but UM, just
37:38
Speaker 1: don't look at those results alone, right. And the reason
37:41
Speaker 1: the FDA would say anything like that is because the
37:45
Speaker 1: point to these tests for the vast majority of people
37:48
Speaker 1: who get them are UM to determine whether they're going
37:52
Speaker 1: to keep this pregnancy or not. UM. There's a lot
37:57
Speaker 1: of concern among people who are UM part of the
38:01
Speaker 1: Down syndrome community that there's not a concerted effort to
38:07
Speaker 1: UM wipe out people with Down syndrome from the diversity
38:13
Speaker 1: of you know, human types. Um. But that a million
38:20
Speaker 1: different individual UM decisions, all going the same way, can
38:25
Speaker 1: ultimately have the same effect. It really depends on where
38:29
Speaker 1: you are in the world. Again, that so I think.
38:32
Speaker 1: I call her Sophia Zang. I'm sorry, her name is
38:34
Speaker 1: Sarah Zang. She wrote that article in The Atlantic. Um, yeah,
38:39
Speaker 1: it was really wonderful. She um. I guess if an
38:41
Speaker 1: article about UM accidentally eradicating Down syndrome people from Earth
38:46
Speaker 1: could be wonderful, it definitely is. But um she uh.
38:50
Speaker 1: She focused on Denmark, where there's something like I think
38:55
Speaker 1: of UM people who come back with a screening that says, yes,
38:58
Speaker 1: your baby is going to have Down Synemer has Down syndrome. Um,
39:02
Speaker 1: they abort, They choose to abort the pregnancy. And I
39:05
Speaker 1: think it's even higher in Iceland. I think it's approaching
39:08
Speaker 1: a dent in Iceland, and as a result, the number
39:12
Speaker 1: of people with Down syndrome being born there's plummeting in
39:16
Speaker 1: I think two thousand and eighteen, Sarah Zang said in Denmark,
39:20
Speaker 1: eighteen people were born in the whole country with Down syndrome.
39:24
Speaker 1: Only seven of them were purposefully born. The other eleven
39:28
Speaker 1: had gotten false negatives and had carried on with the
39:33
Speaker 1: with the pregnancy, and you presume that some of them
39:35
Speaker 1: probably would not have otherwise. I wonder, I don't know.
39:40
Speaker 1: I wonder what it is about that part of the world.
39:43
Speaker 1: I don't know, because if you read the article, she
39:45
Speaker 1: really goes on about how that that country in Scandinavia,
39:49
Speaker 1: I think in general, really kind of considers itself like
39:52
Speaker 1: very diverse, um, culturally and very inclusive and they're not
39:57
Speaker 1: like anti disabled, uh people or anything like that. But
40:02
Speaker 1: when it comes down to it, it's like, yeah, those
40:05
Speaker 1: individual decisions, very private decision. Um, can they add up
40:10
Speaker 1: to that in in private and public? It's different? In
40:13
Speaker 1: private it's a completely different different game apparently. Yeah. And
40:17
Speaker 1: you know, we should also mention that when you get
40:20
Speaker 1: these tests done and they come back, you have that
40:23
Speaker 1: choice to make. But a lot of times it's also
40:26
Speaker 1: like uh, preparing yourself, like, yeah, I'm gonna go through
40:30
Speaker 1: with this pregnancy, and I want to know what to expect.
40:33
Speaker 1: I want to prepare myself. I want to educate myself.
40:36
Speaker 1: I want to um, you know, there's there's money involved,
40:39
Speaker 1: which we're gonna talk about in a minute. So I
40:41
Speaker 1: want to get my finances UM squared away, or make
40:44
Speaker 1: sure I can have it squared away. I think the
40:48
Speaker 1: I guess we should talk a little bit about some
40:50
Speaker 1: of the statistics. UM. The abortion rate for Down syndrome
40:54
Speaker 1: positive pregnancies UH is declining, you know, for sure. UM.
40:59
Speaker 1: It's it's kind of tough in the US because they
41:01
Speaker 1: don't have great stats apparently, but the CDC said between
41:05
Speaker 1: seventy nine and two thousand three UH the number of
41:08
Speaker 1: babies borns with babies born with Down syndrome increased by
41:12
Speaker 1: over that time frame, and al analysis found that termination
41:18
Speaker 1: rates for fetuses with Down syndrome was between UH sixty
41:22
Speaker 1: seven and eight and was declining. Yes, and that's the
41:26
Speaker 1: US only. It doesn't appear to be declining in some
41:29
Speaker 1: of the Scandinavian countries for example. In other places in
41:32
Speaker 1: the world, I think Japan and China also have really
41:34
Speaker 1: high abortion rates for Down syndrome positive pregnancies. But the
41:38
Speaker 1: U s um there's a few factors at play for
41:41
Speaker 1: UM why they would be declining and the down syndrome
41:44
Speaker 1: population would be increasing. UM. I think the national Down
41:47
Speaker 1: syndrome society says about today about people with Down syndrome
41:52
Speaker 1: are born each year, and there are, like I said,
41:54
Speaker 1: a few reasons why it's increasing. One is just because
41:58
Speaker 1: they've been brought of institutions and people have been able
42:02
Speaker 1: to see like, oh, yeah, these are human beings. They're
42:05
Speaker 1: different from me, but there's still human beings and they're
42:08
Speaker 1: the same as me in a lot more ways than
42:10
Speaker 1: I realized. And also again anecdotally, they're amazing people to write. Absolutely,
42:16
Speaker 1: it's like, oh goodness, When I we just accept people
42:18
Speaker 1: as people, then everything gets better. Right. So that was
42:22
Speaker 1: that was just one factor. There's some others too. Uh yeah,
42:25
Speaker 1: one of them. Well, one factor is Hispanic women are
42:29
Speaker 1: much more likely to give birth regardless of whether or
42:32
Speaker 1: not they have down uh syndrome, positive pregnancy happening right. Uh.
42:38
Speaker 1: And then another factor that can be complicated is that
42:42
Speaker 1: these screenings used to be something that you specifically request.
42:46
Speaker 1: Now they're a little more standard, So that could just overall,
42:51
Speaker 1: you know, if you're just gonna have more screenings, that
42:52
Speaker 1: could increase the overall percentage of those positive results of
42:57
Speaker 1: people who still continue with that pregnancy and increase the
43:01
Speaker 1: total number of terminations, so I guess all the numbers
43:04
Speaker 1: would be rising. Right. Also, the fact that people are
43:07
Speaker 1: giving birth later on average is increasing the rate of
43:10
Speaker 1: Down syndrome pregnancies to begin with, and that that means
43:14
Speaker 1: that just by by definition, more Down syndrome people are
43:18
Speaker 1: being born. So I think the number one factor is
43:21
Speaker 1: um being able to take people with Down syndrome to
43:24
Speaker 1: the park now has just changed everything. Yeah, Um, I
43:29
Speaker 1: mentioned money, and there is you know, if there are
43:31
Speaker 1: more medical complications on average, Uh, then there are going
43:35
Speaker 1: to be more medical costs on average, and that is
43:39
Speaker 1: definitely something that people need to think about. I think
43:42
Speaker 1: among there's one study among children between birth and age
43:46
Speaker 1: four that at private insurance, the average medical care costs
43:50
Speaker 1: were about twelve times higher if you had Down syndrome.
43:55
Speaker 1: And I think about families with a child with Down syndrome.
44:00
Speaker 1: Um had a family member that stopped their job, that
44:03
Speaker 1: stopped working to care for them full time, and about
44:07
Speaker 1: also said it caused the financial strain on their family, right, Um,
44:11
Speaker 1: And I mean there's plenty of other challenges as well. Um.
44:14
Speaker 1: One of the things about people with Down syndrome is
44:17
Speaker 1: that they age faster. Their bodies just age more quickly
44:20
Speaker 1: than people without Down syndrome. UM statistic I saw is
44:24
Speaker 1: that a person aged forty with Down syndrome, UH, their
44:28
Speaker 1: bodies probably about five years older than their peers um
44:32
Speaker 1: and in the general population. And then at sixty, their
44:35
Speaker 1: bodies about twenty years older than the average sixty year
44:39
Speaker 1: old in the general population. UM. And then one of
44:42
Speaker 1: the things that I think really kind of looms like
44:45
Speaker 1: a dark cloud over the Down syndrome community is that
44:48
Speaker 1: there's a really good chance that they will develop Alzheimer's,
44:52
Speaker 1: probably better than a fifty percent chance. I saw an
44:56
Speaker 1: editorial in the Washington Post that said a ninety percent
44:59
Speaker 1: chance either way. It's a really good likelihood that they're
45:02
Speaker 1: going to develop Alzheimer's. It's a big problem in the
45:04
Speaker 1: Down syndrome community. Yeah, you sent me that stuff, but
45:07
Speaker 1: I didn't get a chance to look over the reasons why.
45:10
Speaker 1: But they they've kind of think they've isolated why right, Yeah,
45:14
Speaker 1: So that that twenty one chromosome, right, um, that you
45:17
Speaker 1: they often have three copies of that third copy actually
45:20
Speaker 1: boost production of what's called amloid beta, and amloid beta
45:25
Speaker 1: is one of the things that's responsible for the creation
45:27
Speaker 1: of plaques on the brain that leads to Alzheimer's. So
45:31
Speaker 1: is another um substance called TAO, and people with Down
45:35
Speaker 1: syndrome produce more of this stuff, so their brains age faster,
45:38
Speaker 1: so they develop Alzheimer's at a much younger age, and
45:42
Speaker 1: they're they're much more likely too, because they're overproducing these
45:45
Speaker 1: proteins that create the plaque um and then also in UM.
45:50
Speaker 1: The Down syndrome population, Alzheimer's starts to present differently. It's
45:55
Speaker 1: not really memory loss or for forgetfulness that's like an
45:58
Speaker 1: early signed. It's more and this is very said, reduced
46:01
Speaker 1: interest in being sociable, conversing or expressing thoughts, and decreased
46:05
Speaker 1: enthusiasm for usual activities. So there's a lot of people
46:10
Speaker 1: who are like, Okay, well, we're starting to work on
46:12
Speaker 1: Alzheimer's and testing new drugs, obviously we're going to include
46:16
Speaker 1: people with Down syndrome in those tests. And that is
46:20
Speaker 1: absolutely not true. As a matter of fact, there was
46:22
Speaker 1: a test that the FDA explicitly excluded people with Down
46:27
Speaker 1: syndrome from for testing in Alzheimer's drug yes, and so
46:31
Speaker 1: there's there's a real movement to like start to include
46:34
Speaker 1: people with Down syndrome in these clinical trials, and it
46:36
Speaker 1: seems to be starting to to gain some traction. But
46:39
Speaker 1: it's just completely insensible to to just exclude the group
46:45
Speaker 1: that I guess, on average has the highest likelihood of
46:49
Speaker 1: developing Alzheimer's of any other human group around. Yeah. So
46:56
Speaker 1: it's funny. When I was reading this stuff that Livia
46:59
Speaker 1: sent us, was getting um a little frustrated with like
47:03
Speaker 1: this study says this, and you know, we talked to
47:06
Speaker 1: parents that said this, and I was like, well, you know,
47:09
Speaker 1: has someone talked to people with Down syndrome and about
47:13
Speaker 1: how they feel? And good news is Livia held it
47:17
Speaker 1: till the end, and they've done just that uh many times.
47:20
Speaker 1: In fact, that was she found one study in two
47:22
Speaker 1: thousand eleven, and this is of kids twelve and older
47:25
Speaker 1: with Down syndrome, and of them said they were happy
47:29
Speaker 1: with their lives. Uh. Seven percent said they liked who
47:33
Speaker 1: they were, uh, said they like how they look, said
47:38
Speaker 1: they love their family, and eight six percent said they
47:41
Speaker 1: could make friends easily. And then they asked it some
47:44
Speaker 1: sort of open didded questions just to get like, you know,
47:47
Speaker 1: real world answers, and uh, you know, most of these
47:51
Speaker 1: kids did express some frustrations with their condition. Um, but
47:56
Speaker 1: it was parts of their condition and not their lives
48:00
Speaker 1: and not like this is my life is just so
48:03
Speaker 1: frustrating as is like this one part of my life
48:05
Speaker 1: is frustrating. And obviously a lot of this stuff in
48:10
Speaker 1: high school and like in puberty, they found that, you know,
48:13
Speaker 1: there were more reports of kids being sad who had
48:16
Speaker 1: Down syndrome and not adjusting as well. And you know
48:19
Speaker 1: that's that's called puberty and being in high school and
48:22
Speaker 1: it's uh, probably especially rough if you have Down syndrome,
48:25
Speaker 1: but those are the changes that are going on with
48:28
Speaker 1: every kid, and so it may be a little more
48:30
Speaker 1: pronounced at that age. Yeah. And this, um, this is
48:34
Speaker 1: a really good study to skim. It's called Self Perceptions
48:37
Speaker 1: from People with Down Syndrome. It was led by Brian Skoto,
48:40
Speaker 1: was from two thousand eleven. It's available for free online
48:43
Speaker 1: and it has just it's just chock full of quotes
48:46
Speaker 1: from the study. And he even says that they conducted
48:49
Speaker 1: the study because so many people are being presented with
48:52
Speaker 1: all of the downsides of Down syndrome when they're told
48:55
Speaker 1: that their child has Down syndrome, and do they want
48:58
Speaker 1: to keep the pregnancy, and he's like, we need to
49:00
Speaker 1: get other data that shows the full picture out there
49:03
Speaker 1: to people too. That's why he conducted this. But it's
49:06
Speaker 1: a really great study to read. And one of the
49:08
Speaker 1: things that it kind of points out without overtly pointing out,
49:12
Speaker 1: is that people at Down syndrome generally are aware that
49:15
Speaker 1: they have Down syndrome, that they're different in some way,
49:19
Speaker 1: and yet despite that, this study shows that they're way
49:23
Speaker 1: happier on on this self first self reported study granted
49:28
Speaker 1: than the average person UM twelve and older in the
49:32
Speaker 1: general population. Yeah, it's it's a really and you know,
49:36
Speaker 1: I hate that we saved this stuff to the end,
49:37
Speaker 1: but it's kind of a nice way to leave things.
49:39
Speaker 1: I think for sure. I want to shout out to
49:41
Speaker 1: other amazing well three other amazing people, um well four, five, five,
49:47
Speaker 1: But in three groups you're always in there. Um. One
49:52
Speaker 1: is Paul and Chris Sharoon Deforge. I believe when Paul
49:57
Speaker 1: died they both had Down syndrome. They both they have
50:00
Speaker 1: been married for twenty five years. Pretty amazing. Um. There
50:06
Speaker 1: was a woman named Lisa White who was fifty back
50:09
Speaker 1: in two thousand sixteen. She had Down syndrome. It still
50:12
Speaker 1: doesn't believe she's around. But one of the things that
50:14
Speaker 1: was so amazing about two thousand six teams that Lisa
50:17
Speaker 1: turned fifty and her son Nick, her son Nick, who
50:21
Speaker 1: also has Down syndrome, turned twenty. That is really rare
50:25
Speaker 1: in the community. But it also shows like this woman
50:27
Speaker 1: has Down syndrome and she raised a child and she
50:30
Speaker 1: was living independently. Also, yeah, uh, we can also shout
50:34
Speaker 1: out people like Sujiete de Sai, who was the first
50:38
Speaker 1: musician with Down syndrome to play at Carnegie Hall, has
50:42
Speaker 1: played in all fifty states thirteen countries. Uh, if you
50:45
Speaker 1: saw the great movie the Peanut Butter Falcon, really good
50:48
Speaker 1: movie is that I haven't seen. Yeah, it's really good.
50:50
Speaker 1: Has Shyla buff in it. But zach Um gotts again.
50:55
Speaker 1: I think his house pronounces the actor. He's been in
50:57
Speaker 1: a bunch of stuff. But Peanut Butter fact and was
51:00
Speaker 1: certainly the highest profile movie and it's a really, really good,
51:03
Speaker 1: good flick. Okay, I'm gonna check it out. I mean,
51:06
Speaker 1: there's special Olympians who are on the national team, UM
51:10
Speaker 1: runaway models. Um arguably the famous person, the most famous
51:14
Speaker 1: person with Down syndrome, Chris Burke who played Quirky on
51:17
Speaker 1: Life goes On. Gotta shout out Chris Burke for sure.
51:20
Speaker 1: Chris Burke, who played Quirky. Life Goes On was a
51:23
Speaker 1: very big show and a big deal as far as
51:26
Speaker 1: raising awareness, Like it seems like it just a sort
51:29
Speaker 1: of a trite thing to shout out the guy who
51:32
Speaker 1: played Quirky, but that show was. It was a game changer,
51:35
Speaker 1: and not only with just Down syndrome, but just awareness
51:38
Speaker 1: in how people viewed a lot of different kinds of disabilities.
51:42
Speaker 1: So he's worked with the National Down Syndrome Society h
51:47
Speaker 1: for a long time and it's just a great ambassador
51:49
Speaker 1: for that group and speaking you gotta shout out. I
51:51
Speaker 1: also want to shout out Kayala McKeon, who manages grassroots
51:55
Speaker 1: advocacy for the National Down Syndrome Society. She also has
51:59
Speaker 1: Down syndrome herself. She was also the first registered lobbyists
52:02
Speaker 1: in America with Down syndrome. And we met her Chuck,
52:05
Speaker 1: because she came to our Atlanta show, Um where um,
52:09
Speaker 1: we had the National Down Syndrome Society come and then um,
52:12
Speaker 1: what was the name of the animal charity that you supported? Oh?
52:16
Speaker 1: The local one? Yeah, Uh lifeline, Lifeline. That's right, That's
52:21
Speaker 1: what I was gonna say. So, UM, Kayla as a
52:24
Speaker 1: very cool person who is still at it from what
52:25
Speaker 1: I can tell, So shout out Kayla and everybody at
52:28
Speaker 1: the n d SS. Awesome. And then we have one
52:31
Speaker 1: more thing we just have to cover too. We can't
52:33
Speaker 1: not mention it. That article from UM I think New
52:37
Speaker 1: Scientists that there's a study that was carried out and
52:41
Speaker 1: it was just among seven adult men with Down syndrome
52:44
Speaker 1: over six months, but they gave them uh pulses of
52:49
Speaker 1: geneta trope and releasing hormone g n r H and
52:53
Speaker 1: it improved their cognitive function over six months. That's like
53:00
Speaker 1: going from a thousand to add on the old school
53:03
Speaker 1: s a t that actually tested cognitive ability. Yeah. Yeah,
53:08
Speaker 1: when you put in that perspective, it's nuts giving them
53:11
Speaker 1: one hormone. And again that's what actually increases and gets
53:14
Speaker 1: triggered when puberty hits, which also coincides with the decline
53:19
Speaker 1: and cognitive ability among Down syndrome people. So they may
53:22
Speaker 1: have figured out something really big, not just for Down
53:24
Speaker 1: syndrome people, but for Alzheimer's as well. We gotta shout
53:27
Speaker 1: out one more thing Okay, now where were running long?
53:31
Speaker 1: But our very own Jerry sent this to us. Uh.
53:34
Speaker 1: Although it's called Jerry's Habima Theater h A B I
53:37
Speaker 1: m A uh, it is not our Jerry's Theater, just
53:41
Speaker 1: strictly coincidence. And I didn't know about this. This is
53:44
Speaker 1: in Atlanta. It's on tilly Mill Road, and it is
53:48
Speaker 1: a professional, uh theater company of actors and they all
53:54
Speaker 1: have special needs. And apparently there is a show that
53:59
Speaker 1: goes on I think it's this in March every year.
54:02
Speaker 1: It's coming up March nine through to save the date
54:06
Speaker 1: for Cinderella, and tickets go on sale in January. And
54:10
Speaker 1: this is an all inclusive theater company that puts on
54:15
Speaker 1: these plays and it's looks like a wonderful thing. I
54:18
Speaker 1: think Jerry said that she had been and it's like
54:21
Speaker 1: one of the most fun best things uh and as
54:25
Speaker 1: well as being supportive, but just a really fun thing
54:27
Speaker 1: to do. So go check out Jerry's Habima Theater. Okay,
54:34
Speaker 1: I'm out of stuff for now. I got I mean,
54:36
Speaker 1: we could plug people all day, but I'm out of
54:37
Speaker 1: stuff too. Okay, if you want to know more about
54:40
Speaker 1: down syndrome, that's really something that you should go out
54:43
Speaker 1: and learn more about and while you're doing that, in
54:45
Speaker 1: the meantime, I say it's time for listener mail. I'm
54:51
Speaker 1: going to call this UH pretty quick follow up from Fundamentalism.
54:55
Speaker 1: It was released today and as it happens, we start
54:58
Speaker 1: getting emails minutes after release, usually about forty five minutes after,
55:02
Speaker 1: although sometimes people jump the gun and email us during
55:05
Speaker 1: an episode. Hey guys, thanks for the recent episode on fundamentalism.
55:09
Speaker 1: You put into words exactly what I've been going through
55:12
Speaker 1: for the past couple of years. I come from a
55:14
Speaker 1: very fundamentalist Catholic family and have been dealing with all
55:17
Speaker 1: the joy that comes from expressing a different viewpoint. My
55:21
Speaker 1: wife and I are both atheists, and this has been
55:23
Speaker 1: a point of contention with my family never since we
55:25
Speaker 1: have decided to have a non religious wedding. UH. The
55:28
Speaker 1: tension is only increased since we have welcomed our daughter
55:30
Speaker 1: into the world and had to deal with my family's
55:32
Speaker 1: push to baptizer. The episode on fundamentalism is some very
55:36
Speaker 1: good points and definitely allowed me to look at the
55:39
Speaker 1: situation in a different light. The issue is closed mindedness
55:44
Speaker 1: and not necessarily religion. Appreciate all you guys do all
55:48
Speaker 1: the best that is from Jake. Awesome, thank you for that.
55:52
Speaker 1: I can imagine that their wedding someone said God bless
55:55
Speaker 1: you two, and they were like, get out. You know,
55:59
Speaker 1: I'll take a guy bless you. I don't mind it.
56:01
Speaker 1: Uh when you sneeze her anytime. Anytime, if someone uh,
56:05
Speaker 1: I don't know, if my grocery store check her outer
56:08
Speaker 1: just says God bless you have a blessed day, I
56:11
Speaker 1: just say, you know what, thanks very much, because that's
56:13
Speaker 1: that's a kindness that they're bestowing upon me in their
56:16
Speaker 1: own way. Oh yeah, I'm like, you've never heard of
56:19
Speaker 1: separation of church in public. You're fired as you're smashing
56:26
Speaker 1: a sheet cake into your mouth. That's exactly right, because
56:30
Speaker 1: those things don't make it out the door. Well, thanks
56:33
Speaker 1: a lot for sending us that email, Jake, And if
56:36
Speaker 1: you want to be like Jake, then you can send
56:40
Speaker 1: us an email to uh stuff podcast at iHeart radio
56:43
Speaker 1: dot com. Stuff you Should Know is a production of
56:49
Speaker 1: I Heart Radio. For more podcasts my heart Radio, visit
56:52
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56:55
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