This is a collection of resources to support your journey as a clinician and/or patient.

Useful articles/papers

Hypermobility

• A GP Guide to hypermobile EDS by Dr Megan Thomas

• AGA Clinical Practice Update on GI Manifestations and Autonomic or Immune Dysfunction in Hypermobile Ehlers-Danlos Syndrome: Expert Review

POTS/Orthostatic syndromes

• Canadian Cardiovascular Society Position Statement on Postural Orthostatic Tachycardia Syndrome (POTS) and Related Disorders of Chronic Orthostatic Intolerance Diagnosis and Screening Tools

MCAS

• “Diagnosis of mast cell activation syndrome: a global “consensus-2”” Afrin et al Diagnosis 2020 Vol 8 Issue 2

• “Pharmacological treatment options for mast cell activation disease” Molderings et al Naunyn Schmiedebergs Arch Pharmacol. 2016

General

• Dr Megan Thomas’ resource page

• Perioperative guide for hypermobile, MCAS and POTS patients by Dr Jason Lam and Sharon Hennessey. As seen on the Mayo Clinic blog

Podcasts

• The Neurodivergent Woman
  EDS, POTS and MCAS with Dr Megan Thomas and Bianca Comfort S7, E8
  Spotify : Apple

• Bendy Bodies with Dr Linda Bluestein

Diagnosis and Screening Tools

hEDS and HSD

• 2017 Diagnostic criteria for Hypermobile Ehlers Danlos Syndrome for 18yrs+

• 2023 EDS Society Paediatric Framework for paediatric hypermobility

• The Spider - a tool for measuring and tracking multi-systemic symptoms

• EDS Society GP toolkit

POTS

• Malmo POTS questionnaire - a clinical questionnaire for POTS

• NASA Lean Test - a clinical diagnostic tool to confirm orthostatic syndromes. (POTS, orthostatic hypotension etc)

MCAS

• Mast Cell Mediator Release Syndrome Questionnaire - a clinical questionnaire that can support the diagnosis of MCAS

Peak Bodies

EDS / HSD

• Ehlers-Danlos Society

• Ehlers-Danlos Australia​

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POTS / DYSAUTONOMIA

• Australian POTS Foundation

• Dysautonomia International

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MCAS

• The Australasian Mastocytosis Society (TAMS) 

• Mast Cell Action

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CONNECTIVE TISSUE DISORDERS​

• Connective Tissue Disorder Network Australia (CTDNA)

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ME/CFS & LONG COVID

• Emerge Australia
  

Finding your care team

EDS/HSD

• EDS society health professionals directory - directory of self-identified practitioners with interest in Hypermobility
  EDS Society Core Networks - EDS Society vetted networks of clinicians
  

POTS / DYSAUTONOMIA

• Australian POTS Foundation Clinician Directory

• Dysautonomia International Physician Directory
  

MCAS

• The Australasian Mastocytosis Society (TAMS)

I have big plans, but low capacity, More to come!