1.08 A Conversation with a Late Diagnosed Woman, Interview 2

1.08 A Conversation with a Late Diagnosed Woman, Interview 2

The Bendy Mommas continue their conversation on late diagnosis.

Resources and References:
  1. “Neurodivergent: What is It?” Cleveland Clinic Health Library https://my.clevelandclinic.org/health/symptoms/23154-neurodivergent
  2. Csecs JLL, Iodice V, Rae CL, Brooke A, Simmons R, Quadt L, Savage GK, Dowell NG, Prowse F, Themelis K, Mathias CJ, Critchley HD, Eccles JA. Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain. Front Psychiatry. 2022 Feb 2;12:786916. doi: 10.3389/fpsyt.2021.786916. PMID: 35185636; PMCID: PMC8847158. https://pubmed.ncbi.nlm.nih.gov/35185636/
  3. Glans MR, Thelin N, Humble MB, Elwin M, Bejerot S. The Relationship Between Generalised Joint Hypermobility and Autism Spectrum Disorder in Adults: A Large, Cross-Sectional, Case Control Comparison. Front Psychiatry. 2022 Feb 8;12:803334. doi: 10.3389/fpsyt.2021.803334. PMID: 35211037; PMCID: PMC8861852. https://pubmed.ncbi.nlm.nih.gov/35211037/
  4. Glans M, Thelin N, Humble MB, Elwin M, Bejerot S. Association between adult attention-deficit hyperactivity disorder and generalised joint hypermobility: A cross-sectional case control comparison. J Psychiatr Res. 2021 Nov;143:334-340. doi: 10.1016/j.jpsychires.2021.07.006. Epub 2021 Jul 5. PMID: 34560594. https://pubmed.ncbi.nlm.nih.gov/34560594/
  5. Zoccante L, Ciceri ML, Gozzi LA, Gennaro GD, Zerman N. The "Connectivome Theory": A New Model to Understand Autism Spectrum Disorders. Front Psychiatry. 2022 Feb 7;12:794516. doi: 10.3389/fpsyt.2021.794516. PMID: 35250650; PMCID: PMC8892379. https://pubmed.ncbi.nlm.nih.gov/35250650/ , https://www.frontiersin.org/articles/10.3389/fpsyt.2021.794516/full
  6. Norris Labs EDS Resources: https://www.thenorrislab.com/research/ehlers-danlos-syndrome/eds-resources
  7. Harvey Blume, "Neurodiversity: On the neurological underpinnings of geekdom" The Atlantic, September 1998. https://web.mit.edu/comm-forum/legacy/papers/blume.html https://www.theatlantic.com/magazine/archive/1998/09/neurodiversity/305909/
  8. An interview with Judy Singer: http://www.myspectrumsuite.com/meet-judy-singer/
  9. Sonny Jane Wise' website with helpful infographics and resources "The Lived Experience Educator" https://livedexperienceeducator.com/freestuff, TikTok: https://www.tiktok.com/@livedexperienceeducator?_t=8YHZdr0g03a&_r=1
  10. Essay by Ketil Slagstad, "Asperger, the Nazis and the children – the history of the birth of a diagnosis" https://tidsskriftet.no/en/2019/05/essay/asperger-nazis-and-children-history-birth-diagnosis
  11. The Curable App: https://www.curablehealth.com/

Episoder(43)

2.16 Why Get Diagnosed? - Part Two

2.16 Why Get Diagnosed? - Part Two

On this week's episode, the Two Bendy Mommas continue to discuss why they think it’s a smart idea to use your spoons to get diagnosed. They discuss some of the the benefits of going through the diagno...

18 Jul 202444min

2.15 Why Get Diagnosed?

2.15 Why Get Diagnosed?

On this week's episode, the Two Bendy Mommas discuss why they think it’s a smart idea to use your spoons to get diagnosed. They discuss some of the the benefits of going through the diagnostic journey...

11 Jul 20241h 18min

2.14 - Hypermobile Dudes Part 3: The Conclusion

2.14 - Hypermobile Dudes Part 3: The Conclusion

This week, Luna, Shelli, and our special guest panel members Brandon Buccieri (@susanpossibly), Doug Kremer (@DougKrem) and Bryan Jewell (@kindaspoony) wrap up their discussion on how Hypermobile Ehle...

27 Jun 202446min

2.13 - Patient Advocacy & Insurance

2.13 - Patient Advocacy & Insurance

We're back this week with the final segment of our interview with Megan Karanfil to dive deeper into her role as a patient advocate, how advocates can help, and why they're so important to patients, e...

13 Jun 202426min

2.12 - Hypermobile Dudes Part 2: An Interview Panel With Three Men With hEDS

2.12 - Hypermobile Dudes Part 2: An Interview Panel With Three Men With hEDS

The Bendy Mommas continue to look into understanding the intersectionality of Hypermobility by talking to some Bendy Dudes. We gathered a panel of men with Hypermobile Ehlers-Danlos Syndrome (hEDS) to...

30 Mai 202443min

2.11 - The Conversation With a Patient Advocate, Part 3

2.11 - The Conversation With a Patient Advocate, Part 3

Two episodes in one day? Why not? We're back this week with Part 3 of our interview with Megan Karanfil to dive deeper into her role as a patient advocate, how advocates can help, and why they're so ...

23 Mai 202437min

2.10 - Hypermobile Dudes Part 1: An Interview Panel With Three Men With hEDS

2.10 - Hypermobile Dudes Part 1: An Interview Panel With Three Men With hEDS

On this week's episode, Luna and Shelli discuss how Hypermobile Ehlers-Danlos Syndrome affects an often underrepresented community within our Zebra Herd: Men. In our first-ever panel interview, we tal...

23 Mai 202454min

2.9 - The Conversation With a Patient Advocate Continues

2.9 - The Conversation With a Patient Advocate Continues

We're back this week with Part 2 of our interview with Megan Karanfil to dive deeper into her role as a patient advocate, how advocates can help, and why they're so important to patients, especially "...

16 Mai 202435min

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