Down Syndrome 101

I don’t often see as much representation of Down Syndrome within the neurodivergent community, and since October is Down Syndrome Awareness month, I think that means now is the perfect time to expand our understanding.   

So fellow curious minds, let’s get started.  

In this episode we will learn:

• The three types of Down Syndrome
• The incidence of Down Syndrome
• Common expressions of Down Syndrome
• The medical conditions that have an increased risk of occurring in people with Down Syndrome

The episode concludes with a tribute to Daniel "Dan the Man" Wheat.  An extraordinary man who left us way too soon.  Thank you for being a friend Dan.❤️

Sources for more information and/or support:
The National Down Syndrome Society

Greta Harrison and the Born Fabulous Podcast

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Transcript

Speaker 1 0:00

I'm Jessica Kidwell , and this is Neuroversity a space to expand our understanding of neurodiversity and elevate neurodivergent voices and experiences . I don't often see as much representation of Down syndrome within the neurodivergent community and since October is Down Syndrome Awareness Month , I think that means now is the perfect time to expand our understanding . So , fellow curious minds , let's get started . Down syndrome is a naturally occurring genetic condition where there is an extra copy of chromosome 21 . That means that the genes located on chromosome 21 can be overexpressed in that individual . In the US , one in 772 people are born with Down syndrome . There are common characteristics associated with Down syndrome , but the individual impact they have varies from person to person , much like all other neurodivergent diagnoses . And much like other neurodivergent diagnoses , down syndrome is a lifelong condition , an inextricable part of the person , and is not a disease or defect that needs to be cured . Instead , there are a wide range of ways to support each person with Down syndrome to maximize their success in the world . I want to clear up a common confusion on whether we should say Down syndrome or Down syndrome . English physician John Langdon Down was who characterized the condition , but he did not have it himself . And since an apostrophe S connotes ownership or possession . Those within the Down syndrome community prefer not to use it and that's why you will hear me and most others say Down syndrome . Additionally , within the Down syndrome community , person first language is preferred . As a reminder , I did an entire episode on person first versus identity first language . Within the neurodivergent community as a whole , there's a wide range of preference between the two types of language , but specifically in the Down syndrome community , person first is definitely preferred . This means that when referring to anyone with Down syndrome , you will hear a person with Down syndrome instead of a Down syndrome person or a Down person . As I said in that episode and I will reiterate here take your cue from the community that you are in and don't be afraid to ask someone which language they prefer .

Speaker 1 2:46

There are three types of Down syndrome Trisomy 21 , translocation and mosaicism . Trisomy 21 is when the person has a complete extra copy of chromosome 21 . This is the most common type of Down syndrome , occurring 95% of the time . Translocation is when a full or partial copy of chromosome 21 is attached to another chromosome . This happens in 3% of people with Down syndrome . And mosaicism , the rarest type of Down syndrome , is when only some cells in the body have a full or partial extra copy of chromosome 21 , while other cells do not . This happens 2% of the time . 99% of cases of Down syndrome are sporadic , which means it happens by chance Only 1% , and also only occurring within the translocation type of Down syndrome .

Speaker 1 3:50

Is there a hereditary component at all ? And although there is no direct cause for the sporadic occurrence of Down syndrome , there has been studies done that show advanced maternal age increases the incidence of Down syndrome . For example , at the maternal age of 25 , the incidence of Down syndrome is 1 in 1200 . At maternal age 35 , it is 1 in 350 , and at maternal age 45 , it is 1 in 30 . Other than maternal age , there is no definitive scientific research that Down syndrome is caused by environmental factors or the parent's activities before or during pregnancy .

Speaker 1 4:37

As I said earlier , down syndrome can impact every person differently , but here are some common expressions of Down syndrome Low muscle tone , small stature , an upward slant to the eyes , a single deep crease across the center of the palm and cognitive delays . People with Down syndrome are at an increased risk of certain medical conditions such as congenital heart defects , respiratory and hearing problems , alzheimer's disease , childhood leukemia , thyroid conditions and seizure disorders . Remember that every person with Down syndrome is a unique individual and therefore those characteristics and risk of medical conditions vary from person to person and , just like all other neurodivergent types , there's a high likelihood someone with Down syndrome will have co-occurring neurodivergent diagnoses , most commonly , but not limited , to obsessive compulsive disorder and autism , there is a wealth of support and information online for anyone who wants to learn more about Down syndrome . The societal stigma and limitations associated with Down syndrome has changed dramatically through the years . Once seen as a life sentence of hardship and disability , down syndrome is being celebrated as yet another unique opportunity to live a full , productive and happy life . I will link to several sources in the show notes that have been helpful to me in informing this episode , and I'm looking forward to future episodes where I elevate the voices and experiences of people with Down syndrome . I went to end today's episode on a personal note by honoring Daniel Dan , the man Ryan Wheat , who passed away on October 30th 2022 .

Speaker 1 6:40

Dan was born at Naval Air Station , pensacola , florida , on March 24th 1975 , to Dave and Ginger Wheat . Dan was born with Down syndrome and doctors told his parents he would never walk or talk and would probably die before age 10 . He proved those doctors wrong with the love and support of his family and friends . Dan was a friend to everyone he met . He made us all better people and he was truly one of a kind . Dan loved the world as it was , with no yearning for something different or more . He only knew to love unconditionally . It's hard for most people to understand how perfect the world could be if we saw things the way Danny saw them . Dan never competed for attention or recognition or for people to like him . He just rolled with the punches . And he never judged , just treated everyone the same . He saw people for who they are . You were friendly and respectful , or you weren't . So in honor of Dan and my dear friend Liz , who is one of Dan's sisters and who is desperately missing him as we come upon the one year anniversary of his death , I encourage us all to live our lives more like Dan and to reference his beloved Golden Girls . Thank you for being a friend , dan .

Speaker 1 8:09

Neuroversity is hosted and produced by Jessica Kidwell . Our audio engineer is Jarrett Nicolay at Mixtape Studios . Jarrett also created our theme music . Graphic Design for Neuroversity by Kevin Adkins . Web support is provided by George Fox For more information about this episode , ways to support the podcast or anything related to Neuroversity . Please visit our website at wwwneuroversitypodcom . You can also follow us on your podcast app and social media sites . We are at NeuroversityPod on Instagram , twitter , linkedin and Facebook and if you like what we're doing , please tell others about Neuroversity and give us a review on Apple Podcasts . There's plenty of room for more curious minds to enroll .