37. Advocating for Yourself with Aidan Leslie

In this episode of the Bendy Bodies podcast, Aidan Leslie, a retired dancer diagnosed with Hypermobile Ehlers-Danlos syndrome (hEDS), discusses her journey navigating the complex medical system, including managing co-morbidities like POTS and MCAS. She shares her experiences of learning to advocate for herself as a patient with an invisible illness, emphasizing the importance of preparation for medical appointments and finding ways to be proactive. Aidan provides practical tips such as maintaining a symptom diary and creating a medical one-sheet to aid communication with healthcare providers. Dr. Linda Bluestein, a physician and the founder of Bendy Bodies, contributes tips for patients on how to effectively communicate with doctors and manage their healthcare. She underscores the necessity of patients being organized and informed to bridge the gap in understanding often experienced with healthcare professionals who may not fully grasp multi-systemic conditions like EDS.