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Down Syndrome 101

Down Syndrome 101

Released Friday, 27th October 2023
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Down Syndrome 101

Down Syndrome 101

Down Syndrome 101

Down Syndrome 101

Friday, 27th October 2023
Good episode? Give it some love!
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Episode Transcript

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0:00

I'm Jessica Kidwell , and this is Neuroversity

0:02

a space to expand our

0:04

understanding of neurodiversity and

0:07

elevate neurodivergent voices and

0:09

experiences . I

0:11

don't often see as much representation

0:14

of Down syndrome within the neurodivergent

0:16

community and since October

0:19

is Down Syndrome Awareness

0:21

Month , I think that means now

0:23

is the perfect time to expand

0:25

our understanding . So , fellow curious

0:28

minds , let's get started . Down

0:31

syndrome is a naturally occurring genetic

0:33

condition where there is an extra

0:36

copy of chromosome 21

0:38

. That means that

0:40

the genes located on chromosome

0:42

21 can be overexpressed

0:45

in that individual . In the

0:47

US , one in 772

0:50

people are born with Down syndrome

0:52

. There are common characteristics

0:54

associated with Down syndrome , but the

0:57

individual impact they have varies

0:59

from person to person , much like

1:01

all other neurodivergent diagnoses

1:04

. And much like

1:06

other neurodivergent diagnoses

1:08

, down syndrome is a lifelong

1:10

condition , an inextricable

1:12

part of the person , and is not

1:14

a disease or defect

1:16

that needs to be cured . Instead

1:20

, there are a wide range of ways

1:22

to support each person with Down syndrome

1:24

to maximize their success in the world

1:26

. I want to clear up a common

1:28

confusion on whether we

1:30

should say Down syndrome or

1:33

Down syndrome . English

1:35

physician John Langdon Down

1:37

was who characterized the condition

1:40

, but he did not have

1:42

it himself . And since an

1:44

apostrophe S connotes ownership

1:46

or possession . Those within

1:48

the Down syndrome community prefer not

1:51

to use it and that's why you will

1:53

hear me and most others say Down

1:55

syndrome . Additionally , within

1:58

the Down syndrome community , person

2:00

first language is preferred . As

2:03

a reminder , I did an entire episode

2:05

on person first versus identity

2:07

first language . Within the

2:09

neurodivergent community as a whole

2:11

, there's a wide range of preference

2:13

between the two types of language , but

2:16

specifically in the Down syndrome

2:18

community , person first

2:20

is definitely preferred . This

2:23

means that when referring to anyone with

2:26

Down syndrome , you will hear a

2:28

person with Down syndrome instead

2:30

of a Down syndrome person

2:33

or a Down person . As

2:36

I said in that episode and I will reiterate

2:38

here take your cue from the community

2:41

that you are in and don't be afraid

2:43

to ask someone which language they prefer

2:45

. There are three types

2:47

of Down syndrome Trisomy

2:50

21 , translocation

2:52

and mosaicism . Trisomy

2:56

21 is when the person has

2:58

a complete extra copy of

3:00

chromosome 21 . This

3:02

is the most common type of Down syndrome

3:04

, occurring 95% of the time

3:07

. Translocation is

3:09

when a full or partial copy

3:11

of chromosome 21 is attached

3:14

to another chromosome . This

3:17

happens in 3% of people with Down

3:19

syndrome . And mosaicism , the

3:21

rarest type of Down syndrome

3:23

, is when only some cells

3:25

in the body have a full or

3:27

partial extra copy of

3:29

chromosome 21 , while

3:32

other cells do not . This

3:34

happens 2% of the time . 99%

3:37

of cases of Down syndrome are sporadic

3:40

, which means it happens by chance

3:42

Only 1% , and

3:45

also only occurring within

3:47

the translocation type of Down syndrome

3:49

. Is there a hereditary component

3:51

at all ? And

3:54

although there is no direct cause

3:56

for the sporadic occurrence of Down syndrome

3:58

, there has been studies done that

4:00

show advanced maternal age

4:02

increases the incidence of Down

4:04

syndrome . For example , at

4:07

the maternal age of 25 , the

4:09

incidence of Down syndrome is 1

4:12

in 1200 . At

4:14

maternal age 35 , it

4:16

is 1 in 350 , and

4:19

at maternal age 45

4:21

, it is 1 in 30 . Other

4:25

than maternal age , there is no definitive

4:27

scientific research that Down

4:29

syndrome is caused by environmental

4:32

factors or the parent's activities

4:34

before or during pregnancy

4:36

. As I said earlier , down

4:38

syndrome can impact every person

4:40

differently , but here

4:43

are some common expressions of Down syndrome

4:45

Low muscle tone , small

4:48

stature , an upward

4:50

slant to the eyes , a

4:52

single deep crease across the

4:54

center of the palm and cognitive

4:57

delays . People

4:59

with Down syndrome are at an increased

5:02

risk of certain medical conditions

5:04

such as congenital

5:06

heart defects , respiratory

5:08

and hearing problems , alzheimer's

5:11

disease , childhood leukemia

5:13

, thyroid conditions and

5:16

seizure disorders . Remember

5:18

that every person with Down syndrome is a unique

5:20

individual and therefore those

5:23

characteristics and risk of

5:25

medical conditions vary from

5:27

person to person and

5:29

, just like all other neurodivergent

5:31

types , there's a high likelihood

5:34

someone with Down syndrome will

5:36

have co-occurring neurodivergent

5:38

diagnoses , most commonly

5:40

, but not limited , to obsessive

5:43

compulsive disorder and autism , there

5:46

is a wealth of support and information

5:48

online for anyone who wants to learn

5:50

more about Down syndrome . The

5:52

societal stigma and limitations

5:55

associated with Down syndrome has changed

5:57

dramatically through the years . Once

6:00

seen as a life sentence of hardship

6:02

and disability , down syndrome

6:05

is being celebrated as yet

6:07

another unique opportunity to live

6:09

a full , productive and happy

6:11

life . I will link to

6:13

several sources in the show notes that have

6:15

been helpful to me in informing this episode

6:18

, and I'm looking forward

6:20

to future episodes where I elevate

6:22

the voices and experiences of

6:25

people with Down syndrome . I

6:27

went to end today's episode on

6:29

a personal note by honoring

6:31

Daniel Dan , the man Ryan

6:33

Wheat , who passed away on October

6:36

30th 2022 . Dan

6:40

was born at Naval Air Station , pensacola

6:42

, florida , on March 24th 1975

6:46

, to Dave and Ginger Wheat . Dan

6:49

was born with Down syndrome and doctors

6:51

told his parents he would never walk

6:53

or talk and would probably die

6:56

before age 10 . He

6:58

proved those doctors wrong with

7:00

the love and support of his family

7:02

and friends . Dan was a

7:04

friend to everyone he met . He

7:07

made us all better people and

7:09

he was truly one of a kind . Dan

7:12

loved the world as it was , with

7:14

no yearning for something different or

7:16

more . He only knew to love

7:18

unconditionally . It's

7:20

hard for most people to understand how perfect

7:23

the world could be if we saw

7:25

things the way Danny saw them . Dan

7:28

never competed for attention or

7:30

recognition or for people

7:32

to like him . He just rolled

7:34

with the punches . And he never judged

7:37

, just treated everyone the same

7:39

. He saw people

7:41

for who they are . You

7:43

were friendly and respectful , or you weren't . So

7:47

in honor of Dan and my

7:50

dear friend Liz , who is one of Dan's

7:52

sisters and who is desperately

7:54

missing him as we come upon

7:56

the one year anniversary of his

7:58

death , I encourage

8:01

us all to live our lives more like Dan

8:03

and to reference his beloved

8:05

Golden Girls . Thank you for being

8:07

a friend , dan . Neuroversity

8:09

is hosted and produced by Jessica Kidwell

8:12

. Our audio engineer is Jarrett

8:14

Nicolay at Mixtape Studios . Jarrett

8:16

also created our theme music . Graphic

8:19

Design for Neuroversity by Kevin

8:21

Adkins . Web support is

8:23

provided by George Fox For

8:25

more information about this episode

8:27

, ways to support the podcast

8:29

or anything related to Neuroversity

8:32

. Please visit our website at wwwneuroversitypodcom

8:37

. You can also follow us on your

8:39

podcast app and social media sites

8:41

. We are at NeuroversityPod

8:44

on Instagram , twitter , linkedin

8:47

and Facebook and if you like what we're

8:49

doing , please tell others about Neuroversity

8:51

and give us a review on Apple Podcasts

8:54

. There's plenty of room for more

8:56

curious minds to enroll .

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