37. Redefining the Down Syndrome Diagnosis w/Meg Wilkes & Stephanie Meredith

Do you want to help us shift the Down Syndrome narrative in a super practical and very simple way?  Then this is the episode for you!

We talk a lot about how doctors deliver a Down Syndrome diagnosis on this podcast, but we've never discussed doctors and diagnoses and DS with actual medical researchers!  Meg Wilkes and Stephanie Meredith are literally shifting the diagnosis narrative through their research.  Meg is pursuing a masters degree in genetic counseling at the University of South Carolina and her thesis is on: ‘Redefining the Essential Informational Needs of Parents Receiving a Diagnosis of Down Syndrome.’  Stephanie is the medical outreach director at the University of Kentucky who is overseeing Meg’s research, and her 19-year-old son has Down Syndrome!  Thankfully, this dynamic medical duo knows that a newborn with DS has a lot more than health issues and doctors appointments ahead of them, and that’s why they’ve created a survey for all of you!  Parents of children with Down Syndrome, you’re invited to tell Meg all about your diagnosis experience:  what you needed to know, what you did not need to know, and what you wish you knew!  Take the 10-15 minute survey, tell a friend (or 10), and help us redefine the Down Syndrome diagnosis. 

It’s time to bridge the gap between the matter-of-fact-scary-medical stuff that the doctors warn you about, and the wonderful-life-giving-hopeful stuff that social media advocates promise!  So join us for and our fabulous guests as we chat about the research that will challenge doctors to rethink the Down Syndrome diagnosis.  Then, share your thoughts by taking Meg’s survey!

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SHOW LINKS

Survey for Parents

Survey for Genetic Counselors

Stephanie is the author of the materials on lettercase.org as well as the co-author of the books on downsyndromepregnancy.org. 

Stephanie is also a contributer to Amy Julia Becker’s blog, you can read her post here.  And most recently, she wrote for Think Inclusive.

SHOW SPONSOR: PRIDE SOCKS

Pride Socks empowers wearers to be proud of who they are! They also collaborate with Ruby’s Rainbow to help send individuals w/Down Syndrome to college! That’s right, a great product with a great goal! 

Visit https://pridesocks.com/ and use code: theluckyfew at checkout for 15% off your purchase!

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