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2022 Year in Review of Zebra News

The Season Finale



Thank you dear readers for listening to the first season of the Hacking Hypermobility podcast. The Bendy Mommas closed out the season with a recap of the Zebra news from 2022. Luna and Shelli’s 2022 wrap-up has all the news you missed pertinent to Hypermobility and Neurodivergence including all the new medical research in the inherited connective tissue disorders including the Ehlers-Danlos Syndromes, Joint Hypermobility Syndrome, Autism, ADHD, genetics, CRISPR gene editing, therapeutics, treatments, community and even some celebrity news. The items referenced are linked below in this blog post.


But first, we appreciate YOU, our listeners so very much. Thank you for a successful first season!


If you have any questions or comments for future episodes please send us a message (voice, audio, or video) at info@hackinghypermobilitty.com. Be sure to give us permission to use your likeness and if you want us to use your name or not.


 

Resources and References:

  1. The Disability Publication on EDS and Inherited CTD: https://www.hackinghypermobility.com/post/the-new-disability-publication-on-connective-tissue-disorders

  2. Plaque in the Norris Lab: https://muschealth.org/patients-visitors/news/2022/04/07/eds-researchers-patients-meet-for-thank-you-gathering-for-donors

  3. Butler MG, Hossain WA, Steinle J, Gao H, Cox E, Niu Y, Quach M, Veatch OJ. Connective Tissue Disorders and Fragile X Molecular Status in Females: A Case Series and Review. Int J Mol Sci. 2022 Aug 13;23(16):9090. doi: 10.3390/ijms23169090. PMID: 36012355; PMCID: PMC9408984. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9408984/#

  4. Plaut S. Scoping review and interpretation of myofascial pain/fibromyalgia syndrome: An attempt to assemble a medical puzzle. PLoS One. 2022 Feb 16;17(2):e0263087. doi: 10.1371/journal.pone.0263087. PMID: 35171940; PMCID: PMC8849503. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8849503/#

  5. Whalen KC, Crone W. Multidisciplinary Approach to Treating Chronic Pain in Patients with Ehlers–Danlos Syndrome: Critically Appraised Topic. J Pain Res. 2022;15:2893-2904 https://doi.org/10.2147/JPR.S377790

  6. Lazarus, S. (2022, December 29). Millions have the same 'bendy body' disease as my daughter. why isn't the medical profession paying more attention? CNN. Retrieved January 6, 2023, from https://www.cnn.com/2022/12/24/health/hypermobile-ehlers-danlos-syndrome-health-hnk-spc-dst-intl/index.html

  7. Jamil, J. (2022, December 27). Jameela Jamil (@jameelajamil) 's videos with original sound - jameela jamil. TikTok. Retrieved January 6, 2023, from https://www.tiktok.com/@jameelajamil/video/7181635480730078506

  8. Cueto, I. (2022, December 15). Revenge of the gaslit patients: Now, as scientists, they're tackling Ehlers-Danlos Syndromes. STAT. Retrieved January 6, 2023, from https://www.statnews.com/2022/12/12/ehlers-danlos-syndrome-patients-turned-researchers/

  9. Bryson, S. (2022, December 12). Upper Limb Dislocations Frequent in McEDS, Small Study Reports. Ehlers Danlos News. Retrieved January 6, 2023, from https://ehlersdanlosnews.com/news/upper-limb-dislocations-frequent-musculocontractural-eds-small-study/

  10. Isobe F, Hayashi M, Kobayashi R, Nakamura M, Kosho T, Takahashi J. Clinical Presentation and Characteristics of the Upper Extremity in Patients with Musculocontractural Ehlers–Danlos Syndrome. Genes. 2022; 13(11):1978. https://doi.org/10.3390/genes13111978

  11. Anson, P. (2022, December 9). Hypermobility Linked to Depression and Anxiety at Young Age. Pain News Network. Retrieved January 6, 2023, from https://www.painnewsnetwork.org/stories/2022/12/8/hypermobility-linked-to-depression-and-anxiety-at-young-age

  12. Eccles JA, Quadt L, McCarthy H, et alVariant connective tissue (joint hypermobility) and its relevance to depression and anxiety in adolescents: a cohort-based case–control studyBMJ Open 2022;12:e066130. doi: 10.1136/bmjopen-2022-066130 https://bmjopen.bmj.com/content/12/12/e066130

  13. The Marfan Foundation. (2022, December 14). Statement on aortic aneurysm reflecting on the death of Grant Wahl: Clinical urgency and guidance. Marfan Foundation. Retrieved January 6, 2023, from https://marfan.org/2022/12/14/statement-on-aortic-aneurysm-reflecting-on-the-death-of-grant-wahl-clinical-urgency-and-guidance/

  14. The John Ritter Foundation for Aortic Health: https://johnritterfoundation.org/

  15. Mooney, C. (2022, September 27). Spiderverse tackles ableism with its new disabled hero Sun-Spider. CBR. Retrieved January 6, 2023, from https://www.cbr.com/spiderverse-ableism-sun-spider-marvel/

  16. Comic author, Mizz Tee Franklin https://linktr.ee/mizteefranklin

  17. Neuroscience News. (2022, August 12). Breakthrough in search for tinnitus cure. Neuroscience News. Retrieved January 6, 2023, from https://neurosciencenews.com/white-noise-tinnitus-21226/

  18. Figueiredo, M. (2022, January 10). Immune dysfunction common in hypermobile EDS, study finds. Ehlers Danlos News. Retrieved January 6, 2023, from https://ehlersdanlosnews.com/news/immune-dysfunction-common-hypermobile-eds-study-finds/

  19. Spectrum. (2022, December 21). Hot topics in autism research in 2022: Spectrum: Autism research news. Spectrum | Autism Research News. Retrieved January 2, 2023, from https://doi.org/10.53053/JWJR9206

  20. Mizuno, Y., Cai, W., Supekar, K., Makita, K., Takiguchi, S., Silk, T. J., Tomoda, A., & Menon, V. (2022, October 22). Methylphenidate enhances spontaneous fluctuations in reward and cognitive control networks in children with attention-deficit/hyperactivity disorder. Biological Psychiatry: Cognitive Neuroscience and Neuroimaging. Retrieved January 6, 2023, from https://www.biologicalpsychiatrycnni.org/article/S2451-9022(22)00247-6/fulltext

  21. TodayShow. (2022, May 11). What is Ehlers-Danlos syndrome? Halsey reveals diagnosis. TODAY.com. Retrieved January 6, 2023, from https://www.today.com/health/womens-health/ehlers-danlos-syndrome-rcna28215

  22. Barlow, P. (2023, January 4). Woman says MBE is 'A way forward' for her work with people with autism and ADHD. The Argus. Retrieved January 6, 2023, from https://www.theargus.co.uk/news/23221395.new-years-honours-woman-receives-mbe-work-autistic-people/

  23. Review of the 2017 international criteria for Heds and description of HSD. The Ehlers Danlos Society. (2023, January 5). Retrieved January 6, 2023, from https://www.ehlers-danlos.com/review-of-the-2017-international-criteria-for-heds-and-description-of-hsd/

  24. Shapiro, L. (2022, October 10). EDS patients, Carers Support Multidisciplinary Care Teams. Ehlers Danlos News. Retrieved January 6, 2023, from https://ehlersdanlosnews.com/news/eds-patients-carers-support-multidisciplinary-care-teams-survey/

  25. Wexler, M. (2022, June 20). Imbalances in Sensory Signals Linked to Chronic Pain in Hypermobile EDS. Ehlers Danlos News. Retrieved January 6, 2023, from https://ehlersdanlosnews.com/news/imbalances-sensory-signals-linked-chronic-pain-hypermobile-eds/

  26. Askham, A. V. (2022, October 17). Neuropsychologists launch efforts to diversify field: Spectrum: Autism research news. Spectrum News. Retrieved January 6, 2023, from https://www.spectrumnews.org/news/neurospychologists-launch-efforts-to-diversify-field/

  27. De Wandele I, Colman M, Hermans L, Van Oosterwijck J, Meeus M, Rombaut L, Brusselmans G, Syx D, Calders P, Malfait F. Exploring pain mechanisms in hypermobile Ehlers-Danlos syndrome: A case-control study. Eur J Pain. 2022 Jul;26(6):1355-1367. doi: 10.1002/ejp.1956. Epub 2022 May 11. PMID: 35442549. https://pubmed.ncbi.nlm.nih.gov/35442549/

  28. Doyle TA, Halverson CME. Use of complementary and alternative medicine by patients with hypermobile Ehlers-Danlos Syndrome: A qualitative study. Front Med (Lausanne). 2022 Dec 14;9:1056438. doi: 10.3389/fmed.2022.1056438. PMID: 36590929; PMCID: PMC9794619. https://pubmed.ncbi.nlm.nih.gov/36590929/

  29. Di Giosaffatte N, Ferraris A, Gaudioso F, Lodato V, Savino E, Celletti C, Camerota F, Bargiacchi S, Laino L, Majore S, Bottillo I, Grammatico P. Congenital Defects in a Patient Carrying a Novel Homozygous AEBP1 Variant: Further Expansion of the Phenotypic Spectrum of Ehlers-Danlos Syndrome Classical-like Type 2? Genes (Basel). 2022 Dec 14;13(12):2358. doi: 10.3390/genes13122358. PMID: 36553625; PMCID: PMC9777638. https://pubmed.ncbi.nlm.nih.gov/36553625/

  30. Ritelli M, Chiarelli N, Cinquina V, Zoppi N, Bertini V, Venturini M, Colombi M. RNA-Seq of Dermal Fibroblasts from Patients with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Supports Their Categorization as a Single Entity with Involvement of Extracellular Matrix Degrading and Proinflammatory Pathomechanisms. Cells. 2022 Dec 14;11(24):4040. doi: 10.3390/cells11244040. PMID: 36552803; PMCID: PMC9777098. https://pubmed.ncbi.nlm.nih.gov/36552803/

  31. Bieniak KH, Tinkle BT, Tran ST. The role of functional disability and social support in psychological outcomes for individuals with pediatric hypermobile ehlers-danlos syndrome. J Child Health Care. 2022 Dec 9:13674935221143822. doi: 10.1177/13674935221143822. Epub ahead of print. PMID: 36484120. https://pubmed.ncbi.nlm.nih.gov/36484120/

  32. Igharo D, Thiel JC, Rolke R, Akkaya M, Weis J, Katona I, Schulz JB, Maier A. Skin biopsy reveals generalized small fibre neuropathy in hypermobile Ehlers-Danlos syndromes. Eur J Neurol. 2022 Nov 27. doi: 10.1111/ene.15649. Epub ahead of print. PMID: 36437696. https://pubmed.ncbi.nlm.nih.gov/36437696/

  33. Lattimore P, Harrison F. Pilot study of an online-delivered mindfulness meditation in Ehlers-Danlos syndrome (hEDS): effect on quality-of-life and participant lived experience. Disabil Rehabil. 2022 Nov 3:1-8. doi: 10.1080/09638288.2022.2140843. Epub ahead of print. PMID: 36326346.https://pubmed.ncbi.nlm.nih.gov/36326346/

  34. https://pubmed.ncbi.nlm.nih.gov/36247916/ Hypermobile Ehlers-Danlos Syndrome: A Prodromal Subtype of Functional Movement Disorders?

  35. https://pubmed.ncbi.nlm.nih.gov/36222285/ Patient experience of chronic illness care and complementary integrative health use: a cross-sectional study of patients with hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndromes (EDS)

  36. https://pubmed.ncbi.nlm.nih.gov/36209348/ Assessment of the beliefs, needs, and expectations for genetic counseling of patients with hypermobile Ehlers-Danlos syndrome

  37. https://pubmed.ncbi.nlm.nih.gov/36188999/ The Impact of Hypermobile "Ehlers-Danlos Syndrome" and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships

  38. Margolesky J, Puentes D, Espay AJ. Hypermobile Ehlers-Danlos Syndrome: A Prodromal Subtype of Functional Movement Disorders? Mov Disord Clin Pract. 2022 Aug 24;9(7):956-960. doi: 10.1002/mdc3.13545. PMID: 36247916; PMCID: PMC9547148. https://pubmed.ncbi.nlm.nih.gov/36090363/

  39. Ashtari S, Taylor AD. The Internet Knows More Than My Physician: Qualitative Interview Study of People With Rare Diseases and How They Use Online Support Groups. J Med Internet Res. 2022 Aug 25;24(8):e39172. doi: 10.2196/39172. PMID: 36006679; PMCID: PMC9459833. https://pubmed.ncbi.nlm.nih.gov/36006679/

  40. Alanis-Funes GJ, Lira-Albarrán S, Hernández-Pérez J, Garza-Elizondo MA, Ortíz-López R, Elizondo CV, Rojas-Martinez A, Chávez-Santoscoy RA, Rangel-Escareño C. Genomic Characterization by Whole-Exome Sequencing of Hypermobility Spectrum Disorder. Genes (Basel). 2022 Jul 18;13(7):1269. doi: 10.3390/genes13071269. PMID: 35886052; PMCID: PMC9319525.https://pubmed.ncbi.nlm.nih.gov/35886052/

  41. Knight DRT, Confiado SM, Bruno KA, Fairweather D, Seymour-Sonnier AM, Jain A, Gehin JM, Whelan ER, Culberson JH, Munipalli B, Dawson NL, Rozen TD, Wick JJ, Kotha A. Establishing an Ehlers-Danlos Syndrome Clinic: Lessons Learned. SN Compr Clin Med. 2022;4(1):138. doi: 10.1007/s42399-022-01218-w. Epub 2022 Jul 5. PMID: 35811641; PMCID: PMC9255530. https://pubmed.ncbi.nlm.nih.gov/35811641/

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1 Comment


I've edited this comment 15 times, can you relate?-

Listening to you has helped me So much. I'm 49, diagnosed w EDS at 47... like you both, I am finally putting the pieces together. Knowing who I am, now knowing who I was...

It's a lot.

I am so grateful to have you :-)

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