69 - Donna Sullivan (TCAPP) - Supporting Children and Families Impacted by EDS, Hypermobility & More
Content advisory: This episode contains discussion of highly sensitive topics including suicide and allegations of child abuse. Please exercise listener discretion. On this episode, Kerry interviews Donna Sullivan, a patient advocate with the organization TCAPP, The Coalition Against Pediatric Pain. She is a graduate of Providence College and has worked for more than two decades in media, communications and marketing with some of the world’s biggest brands. Donna uses her skills to help TCAPP raise awareness of the needs of children living with complex pain. She and her husband have three children diagnosed with Ehlers-Danlos Syndrome, POTS, and complex regional pain syndrome. Donna's goal is to give voice to the real struggles that families with complex pain face in trying to get appropriate care and treatment. Links: TCAPP Website https://tcapp.org/ TCAPP Summer Pain Camp https://tcapp.org/summer-pain-camp/ Fundraiser for Documentary: https://openeyepictures.com/complicated https://www.pathwaystotrust.org/initiatives https://www.thecut.com/2022/10/child-abuse-munchausen-syndrome-by-proxy.html When the Helping Hand Hurts: How Medical Child Abuse Charges Are Undermining Parents’ Decision Making Rights over Children’s Medical Care by Maxine Eichner https://aaml.org/wp-content/uploads/MAT102-1.pdf