Episode 3: EDS, Medical Research & Neurodivergence
EDS Unplugged
In this episode, Cassandra and Marcia speak with Jan Groh, fellow EDSer, advocate, creator of the Oh Twist blog and co-author of the EDS Toolkit. Transcript: Links to Resources shared in this episode: OH Twist X (Twitter) FB Patreon ORGS/PROJECTS Ehlers-Danlos Support UK https://www.ehlers-danlos.org/ EDS Toolkit Dr Emma Reinhold X (Twitter) Medical University of South Carolina (MUSC) The Ehlers Danlos Society (TEDS) HEDGE study Norris Lab Kallikrein Gene Study Dr Byers University of Washington Mast Cell Diseases Society (TMS) ...
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Episode 2: Medically Complex Children
EDS Unplugged
In this episode we’re so excited to be joined by Donna Sullivan, advocate and filmmaker behind the powerful documentary “Complicated.” Donna’s work shines a light on the lived experiences of those living with EDS and chronic pain, especially children — and she’s using film as a tool for empathy and understanding. Transcript: Links to Resources shared in this episode: Donna M. Sullivan, Director, Patient Advocacy: Pathways To Trust: https://www.pathwaystotrust.org Additional Board Positions: The Coalition Against Pediatric Pain The Connective Tissue...
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Episode 1: Invisible Disability Awareness
EDS Unplugged
We are very pleased to announce the first episode of the EDS Unplugged podcast, brought to you by Chronic Pain Partners. In this episode, hosts Cassandra and Marcia speak with Kate Schultz about what we do here at Chronic Pain Partners and living with EDS in the run up to Invisible Disabilities Week. Episode Transcript:
info_outlineIn this episode we’re so excited to be joined by Donna Sullivan, advocate and filmmaker behind the powerful documentary “Complicated.”
Donna’s work shines a light on the lived experiences of those living with EDS and chronic pain, especially children — and she’s using film as a tool for empathy and understanding.
Transcript: Chronic Pain Partners
Links to Resources shared in this episode:
Donna M. Sullivan, Director, Patient Advocacy: https://linktr.ee/dmsconsulting
Pathways To Trust: https://www.pathwaystotrust.org
Additional Board Positions: The Coalition Against Pediatric Pain https://tcapp.org
The Connective Tissue Coalition: www.connectivetissuecoalition.org
Mito Action Advocacy Support: https://www.mitoaction.org/resources-planning/medical-child-abuse/
EDS Society Ahead Coalition: https://www.ehlers-danlos.com/ahead-coalition/
The Do No Harm Project: https://www.thedonoharmproject.com
Open Eye Pictures: https://openeyepix.org
Film “Complicated”: https://openeyepix.org/complicated
FB page: https://www.facebook.com/complicatedthemovie
Elevate Rare: https://elevaterare.org
EDS CLINIC: https://www.eds.clinic
EDSUNPLUGGED: Linktr.ee/EDS_unplugged
EDS Unplugged Instagram: https://www.instagram.com/eds_unplugged
MEDICAL REFERENCES
Dysautonomia
A group of disorders characterised by malfunction of the autonomic nervous system (ANS), which controls involuntary bodily functions such as heart rate, blood pressure, digestion, temperature regulation, and bladder and bowel function.
Complex Regional Pain Syndrome (CRPS)
A condition characterised by persistent, severe, and debilitating pain that typically affects a single limb, often following an injury, surgery, stroke, or heart attack.
Chiari Malformation
A structural abnormality where part of the brain, typically the cerebellum, extends below the foramen magnum - the opening at the base of the skull - into the spinal canal.
This downward displacement can cause pressure on the brainstem and spinal cord, disrupt the flow of cerebrospinal fluid (CSF), and lead to a wide range of symptoms.
Jugular Vein Compression The obstruction of blood flow in the jugular vein, primarily the internal jugular vein, due to external pressure from structures in the neck.