• Episode 2: Medically Complex Children
    Nov 25 2025

    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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    57 mins
  • Episode 1: Invisible Disability Awareness
    Sep 28 2025

    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.

    www.chronicpainpartners.com

    Episode Transcript: https://www.chronicpainpartners.com/eds-unplugged-podcast-episode-1-invisible-disabilities-awareness-with-kate-schultz/

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    28 mins