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Show Notes Episode 1.02

Resources mentioned in this episode are listed and linked here. Your ‘homework’ is at the end of this list.


In this episode we did a general overview of seeking a diagnosis related to Hypermobility symptoms. Seems simple right? Unfortunately we still managed to almost cry. Here are some of the resources mentioned to help you get your ducks in a row.


Books:

Jovin, Diana. (2020). Disjointed: Navigating the diagnosis and management of Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. Hidden Stripes Publications.


Smith, Clair. (2017). Understanding Hypermobile Ehlers-Danlos Syndrome & Hypermobility Spectrum Disorder. Red Cliff House Publications. https://www.redcliffhousepublications.co.uk/product-page/understanding-hypermobile-ehlers-danlos-syndrome-hypermobility-spectrum-disord


Author’s website: https://www.edhs.info/

Some free excerpts on EDS Support UK GP Toolkit: https://gptoolkit.ehlers-danlos.org/


Organizations:

The Ehlers-Danlos Society:


Ehlers-Danlos Support UK:


Vascular EDS Non-profit site:


Medical Publications Referenced in this Episode:

Demmler JC, Atkinson MD, Reinhold EJ, Choy E, Lyons RA, Brophy ST. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case-control comparison. BMJ Open. 2019 Nov 4;9(11):e031365. doi: 10.1136/bmjopen-2019-031365. PMID: 31685485; PMCID: PMC6858200. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6858200/


Atwell K, Michael W, Dubey J, James S, Martonffy A, Anderson S, Rudin N, Schrager S. Diagnosis and Management of Hypermobility Spectrum Disorders in Primary Care. J Am Board Fam Med. 2021 Jul-Aug;34(4):838-848. doi: 10.3122/jabfm.2021.04.200374. PMID: 34312277. https://www.jabfm.org/content/34/4/838.long#sec-13


Miklovic T, Sieg VC. Ehlers Danlos Syndrome. [Updated 2022 Jun 9]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK549814/


Glans M, Humble MB, Elwin M, Bejerot S. Self-rated joint hypermobility: the five-part questionnaire evaluated in a Swedish non-clinical adult population. BMC Musculoskelet Disord. 2020 Mar 17;21(1):174. doi: 10.1186/s12891-020-3067-1. PMID: 32183749; PMCID: PMC7079417. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7079417/


Medical Provider Resources:

EDS Support UK GP Toolkit:


HEDGE Study:


Zebra News Break:

Wexler, M. (2022, May 23). Ehlers-Danlos Society Awards $400K for New Research Into hEDS, HSD. Ehlers Danlos News. Retrieved August 19, 2022, from https://ehlersdanlosnews.com/news/ehlers-danlos-society-funds-research-project-biology-heds-hsd/


Flow Charts:


EDS UK flow chart - How to get assessed


Flow Chart - Rare Types:


Your Homework - Screening Tools and Diagnostic Resources:

Screening tools for assessing hypermobility including the 5-Part Questionnaire and Beighton Scoring System:


Full Diagnostic criterial for Hypermobile EDS (Heds) on EDS Society website:


The 5-Part Questionnaire for Hypermobility (Hakim and Grahame, 2003):

  1. Can you now [or could you ever] place your hands flat on the floor without bending your knees?

  2. Can you now [or could you ever] bend your thumb to touch your forearm?

  3. As a child, did you amuse your friends by contorting your body into strange shapes or could you do the splits?

  4. As a child or teenager, did your kneecap or shoulder dislocate on more than one occasion?

  5. Do you consider yourself “double-jointed”?


“Quick questions designed to assist GPs” from Clair Smith’s book:



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