What’s the connection between chronic pain, misdiagnosis, and neurodivergent health? This week’s episode takes a deep dive into Hypermobile Ehlers-Danlos Syndrome (hEDS) and what it reveals about our healthcare system.
On this episode of The Neurodivergent Report, we explore the complex genetic overlap between the neurodivergence spectrum and chronic health conditions, particularly hypermobile Ehlers-Danlos Syndrome (hEDS). From diagnosis delays to hormonal impacts and gender bias, we unpack what it's like to live in a body that’s often misunderstood.
Curious what’s inside:
What hypermobility actually is and why it takes so long to diagnose
The strong genetic link between hEDS, ADHD, and autism
How gender hormones affect symptoms and care
Listen now for coping strategies, community support, and a vision for better systems of identification and care!
Let us know your thoughts @ndreportpod on the socials.
However you are able to engage, thanks for being here!
Love, Sarah 💜
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📚 Resources for more on this topic:
https://www.ehlers-danlos.com/assessing-joint-hypermobility/
2021 Prevalence study: https://www.tandfonline.com/doi/full/10.2147/NDT.S290494#d1e171
Sam's Research References:
1 Brittain, Mackenzie, et al. 2023. Physical Therapy Interventions in Generalized Hypermobility Spectrum Disorder and Hypermobile Ehlers-Danlos Syndrome: A Scoping Review. Disability and Rehabilitation, 25, p. 1–18. https://doi.org/10.1080/09638288.2023.2216028.
2 Buckner, Martin. 2014. Ehlers-Danlos syndrome: the role of acute inpatient rehabilitation. Journal of Prosthetics & Orthotics-Academy Annual Meeting Journal of Proceedings.
3 Castori, Marco. 2012. Ehlers-Danlos syndrome, hypermobility type: An underdiagnosed hereditary connective tissue disorder with mucocutaneous, articular, and systemic manifestations. ISRN Dermatology, pp. 1–22. https://doi.org/10.5402/2012/751768.
4 Csecs, J., Dowell, N., et al. 2021. Variant connective tissue (joint hypermobility) and dysautonomia are associated with multimorbidity at the intersection between physical and psychological health. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. https://doi.org/10.1002/ ajmg.c.31957
5 Csecs, Jenny, and Iodice, Valeria. 2022. Joint hypermobility links neurodivergence to dysautonomia and pain. Frontiers in Psychiatry, 12 (2). https://doi.org/10.3389/fpsyt.2021.786916.
6 Dupuy, Emma G., et al. 2017. Ehlers-Danlos syndrome, hypermobility type: Impact of somatosensory orthoses on postural control (a pilot study). Frontiers in Human Neuroscience, 11. https://doi.org/10.3389/fnhum.2017.00283.
7 Halverson, Colin M.E., et al. 2023. Comorbidity, Misdiagnoses, and the Diagnostic Odyssey in Patients with Hypermobile Ehlers-Danlos Syndrome. Genetics in Medicine Open, 1(1), p. 100812. https://doi.org/10.1016/j.gimo.2023.100812.
8 Higo A, et al. 2023. The value of dynamic elastomeric fabric orthoses in the management of a complex hypermobile Ehlers-Danlos syndrome patient: A case report. Clin Case Rep., 11. doi:10.1002/ccr3.6821
9 Hsieh, Ru-Lan, et al. 2019. Short-term effects of customized arch support insoles on symptomatic flexible flatfoot in children. LWW Journals. journals.lww.com/md-journal/Fulltext/2018/05180/Short_term_effects_of_customized_arch_support.12.aspx.
10 Jensen, Anne, et al. 2020. Finger Orthoses for Management of Joint Hypermobility Disorders: Relative Effects on Hand Function and Cognitive Load Finger Orthoses for Management of Joint Hypermobility Disorders. Sage Journals. journals.sagepub.com/doi/full/10.1177/0309364620956866.
11 Lusardi, Michelle, et al. (2012). Orthotics and Prosthetics in Rehabilitation, 3rd Edition. Saunders Publishing.
12 Pandey, Sanjay, et al. (2021). “Movement disorders and musculoskeletal system: A reciprocal relationship.” Movement Disorders Clinical Practice, 9 (2), p. 156–169, https://doi.org/10.1002/mdc3.13390
13 Russek, Leslie. (2022) Cervical Instability in Hypermobile Patients: When Orthopedic Problems Cause Neurological Issues, Journal of Orthopaedic & Sports Physical Therapy - Movement Science Media. https://www.jospt.org/do/10.2519/jospt.blog.20230917
14 Snowdon, Nicky, and Dadla, Sakina. (2023). “Perceptions and experiences of allied health professionals of fabric orthoses for people with joint hypermobility syndromes: A qualitative study.” International Journal of Therapy and Rehabilitation, 30 (2), pp. 1–14. https://doi.org/10.12968/ijtr.2022.0148
🔑 Keywords:
#Neurodivergent #HypermobileEDS #ChronicPain #MentalHealth #Community #Neurodiversity #HEDS #EDS #WomensHormones #Misdiagnosis #InformedConsent #CopingStrategies #Neurospicy #Intersectionality #SupportSystems #InvisibleIllness
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