The Chromodiversity™ Podcast24 Jan 2023

Peter’s XXY Journey Part 2: A Lifetime of Lessons

🟢 “Had I been diagnosed earlier, how much more could I have accomplished?”

In our previous episode “Peter’s XXY Journey Part 1: a 63-Year Diagnostic Odyssey”, Peter Street from Australia compares his seemingly endless diagnostic odyssey to getting a boxing ring with as your opponent the invisible man - not knowing where the next punch will come from.

In this second of two episodes, he shares key takeaways from years of hard earned experience such as:

For people with chromodiversity: it's ok to feel different, important not to compare yourself to others, and essential to find the right support networks.
For parents: let your children make mistakes, get them the best education you can, encourage their independence, and be wary of endless negative information on the Internet.
For doctors: listen, listen and listen again. Family practitioners need better training about genetic differences, as do teachers. The earlier the diagnosis, the better, provided there is easy access to up to date information & help.
For researchers: interview more parents and take the unique insights of lived experience into account.

This episode concludes Season 2 about “Growing Up With Chromodiversity” featuring a mix of groundbreaking early age research and lived experience.

At a time of blistering advances in genetics and digital healthcare, tune in next week for Season 3 on the topic of "New Science and New Support."

🙏 Chromodiversity™ is a listener funded podcast. Make a difference by donating here: https://www.chromodiversity.org/donate

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Episoder(40)

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How to Predict Autism in Extra X & Y Children (1/2)

🔴 "Early symptoms of autism spectrum disorder (ASD) in 1-8 year old children with sex chromosome trisomies (XXX, XXY, XYY), and the predictive value of joint attention.*" Although not many medical pr...

21 Feb 202327min

"Dazzling Zebras" with Professor Lara Bloom, Pres. & CEO of The Ehlers-Danlos Society

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13 Feb 202331min

Extra X & Y: Exciting Future Trajectories*

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Peter’s XXY Journey Part 1: A 63-Year Diagnostic Odyssey

🟢 “95% of my life has been spent not knowing of my 47,XXY. It was like getting into a boxing ring with as your opponent the invisible man. You never saw where the punches were coming from.”In this ex...

17 Jan 202330min

"Radical Inclusion," Featuring Author Jodi Samuels* (2/2)

🟢 "Kindness Kills..." Despite all the talk about diversity and inclusion, why are children with genetic differences and disabilities still socially excluded? And what do we plan to do about it?In thi...

10 Jan 202329min