DEARG: Delivering Endometriosis and Adenomyosis Resources and Guidance

Johanna Huber is a seasoned Physiotherapist with 14 years of experience, coupled with 8 years as a Yoga Teacher. Originally hailing from Munich, Germany, Johanna has made Cork City, Ireland her home for the past decade. She established PhysioYoga Cork, where she devotes herself full-time to teaching Physio Led Yoga. Here, she skillfully integrates principles rooted in evidence-based Physio, encompassing strength, mobility, and pain science, with mind-body centred concepts such as mindfulness, compassion science, and nervous system regulation.

Johanna's mission is to democratise science-based holistic approaches, making them more accessible to the general public. Her goal is to empower individuals to deepen their understanding of their bodies and unique needs, ultimately enabling them to cultivate greater strength, flexibility, and relaxation—both physically and on a mental-emotional level.

Over the course of 25 years, Johanna personally grappled with severe pelvic and thoracic Endometriosis, alongside Adenomyosis. Her journey led her to seek expertise abroad for diagnosis and treatment, as local healthcare providers lacked the necessary proficiency in this field. Faced with diminishing quality of life in the years leading up to her expert surgery, Johanna had no choice but to become an expert herself. She was fortunate to access accurate education that enabled her to make an informed decision about her treatment. From this experience, she fervently believes that contemporary medical care should not hinge on chance. Until systemic change occurs, advocating and speaking out is paramount, for, as Johanna asserts, nobody else will champion this cause if we do not.

Johanna is on Instragram https://www.instagram.com/physioyogacork/

In this episode of DEARG, Kathleen King is joined by Heather Guidone, a board-certified patient advocate and program director of the Center for Endometriosis Care. Heather shares her personal journey with endometriosis, adenomyosis, and advocacy, emphasizing the importance of advocacy based on lived experiences.

Kathleen and Heather reflect on the evolution of endometriosis advocacy and the challenges of ensuring accurate information in today's digital age. They emphasize the significance of fact-checking, seeking evidence-based resources, and collaborating with trusted sources.

The conversation dives deep into the pivotal role of patients in research, highlighting the need for genuine inclusion and representation. Both hosts underscore the transformative potential that diverse perspectives bring to the understanding and treatment of endometriosis and adenomyosis.

Join Kathleen and Heather as they navigate the complexities of these conditions, sharing insights, experiences, and invaluable advice for advocates, patients, and supporters alike.

DEARG is a podcast dedicated to providing essential information about endometriosis and adenomyosis. Hosted by Kathleen King, an advocate based in Ireland with a profound interest in these conditions, DEARG features expert guests and advocates like Heather Guidone, sharing their knowledge and experiences.

Heather Guidone, BCPA is the CEC’s Surgical Program Director. A nationally Board-certified healthcare Advocate, she is proud to have joined Dr Sinervo at his Center more than 18 years ago. She manages the CEC’s comprehensive multidisciplinary care program, facilitates the Center’s clinical research, education, awareness, and legislative/policy endeavors and coordinates the CEC’s MIGS/Endometriosis Surgical Fellowship Program. She has focused on 'bench to beltway to bedside' efforts in endometriosis for over 30 years, advancing various clinical, research, legislative/policy, education, and inclusivity initiatives related to the disease. She is also someone who has personally struggled with advanced endometriosis and pelvic pain gynepathologies as well, and her lived experiences bring unique perspectives to her professional works and fuel her passion to effect change on the way endometriosis is researched, treated, and publicly perceived. Heather has received various awards for her work and continues to volunteer her time to several collaborative endeavors, including as a Reviewer for various federal Medical Research Grant Programs. She has also contributed to countless books and publications on endometriosis and related health concerns over the past three decades. She looks forward to helping guide your CEC journey with compassionate expertise and understanding.

Additional Reading:

Link to Orla's Instagram https://www.instagram.com/orlacorkendowarrior/

In this episode, Kathleen is joined by Orla O'Connor, a prominent endometriosis advocate from Cork, Ireland. Together, they dive into the vital role of advocacy in Ireland, addressing prevalent questions regarding the cross-border directive. Misinformation surrounding endometriosis is a key focus, exploring its impact on the community and advocacy efforts. The conversation sheds light on the complexities of referrals and the nuances between cross-border care and travel abroad screening. Orla provides valuable insights into the reimbursement process, emphasizing the importance of accurate record-keeping. The episode closes with a reflection on the collaborative spirit within the endometriosis community, highlighting the significance of shared experiences in advocacy. Tune in for expert advice and practical tips on navigating endometriosis care in Ireland.

Link to Orla's Instagram https://www.instagram.com/orlacorkendowarrior/

Welcome to DEARG - Delivering Endometriosis and Adenomyosis Resources and Guidance. The podcast and information service to inform, empower and deliver accurate information on endometriosis and adenomyosis in Ireland.