Episode 2: Medically Complex Children

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: 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.

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