Resources and Community Support for EDS in Australia

On this week’s episode Monique chats with two amazing guests – Specialist GP Dr Megan Thomas (she / they) and Clinical Psychologist Bianca Comfort (she / her) – about Ehlers Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Disorder (MCAS).

Dr Megan is a queer, disabled, neurodivergent doctor with lived experience of EDS, POTS, MCAS, and related conditions. She is a GP Specialist and one of the Founding Directors of Connected Health Alliance, an EDS CORE Network of Excellence and health promotion charity working to improve the lives of hypermobile humans through the provision of interdisciplinary healthcare, clinician education, and research. Megan is a passionate advocate of holistic, trauma-informed, person-centred care that is affirming for people of all neurotypes, identities, and experiences.

Bianca is a Melbourne-based neurodivergent Clinical Psychologist and is the Director of Comfort Psychology, a telehealth practice focused on chronic illness and neurodivergence. She is also the Vice President of the Australian Psychological Society (APS), and Co-Chair of the Australian EDS & HSD Network. Bianca's expertise lies in the intersection between neurodivergence and chronic illnesses such as EDS, POTS, and MCAS. Drawing from both her professional and lived experience, Bianca is a passionate advocate and educator.

Monique, Megan, and Bianca cover:

• Megan and Bianca share what neurodivergence means to them, and their experiences as neurodivergent health practitioners with chronic illnesses.
• What are EDS, POTS, and MCAS, and how are these conditions diagnosed?
• Why do we see EDS, POTS, and MCAS commonly occurring together?
• How do these three conditions relate to Autism and ADHD?
• Factors to consider when managing multiple co-occurring conditions.
• The triple empathy problem.
• The types of supports people may need if they have these conditions.
• How to access support.

Things we mentioned:

• The Beighton Score System for EDS and the Hakim 5 questionnaire for hypermobility can be found on the Ehlers-Danlos Society website.
• Mast Cell Mediator Release Syndrome Questionnaire.
• The EDS Society
• The Australian POTS foundation
• The Australian EDS and HSD Network
• The Australian Mastocytosis Society
• Studies on the overlap between EDS, Autism, and ADHD: Cederlöf et al., 2016; Dogan et al., 2011; Shiari et al., 2013; Csecs et al., 2020; Csecs et al., 2022.
• Research on “clinician associated trauma” experienced by patients with EDS - Halverson, Penwell, & Francomano, 2023.

Find Bianca at her clinic, Comfort Psychology, and on Instagram @comfortpsychology. Find Megan through her website, Dr Megan Thomas, or her clinic, Connected Health Alliance, and on socials @drmeganthomas and @connectedhealthalliance.

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