Heather Guidone, BCPA and Programme Director, Center for Endometriosis Care, Atlanta. скачать в хорошем качестве

Heather Guidone, BCPA and Programme Director, Center for Endometriosis Care, Atlanta.

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, emphasising the importance of advocacy based on lived experiences. They reflect on the evolution of endometriosis advocacy and the challenges of ensuring accurate information in today's digital age. They emphasise 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. They discuss the importance of patient inclusion in research and the need for more resources and surgical expertise. They also address the backlash and criticism faced by advocates. The conversation highlights the dangers of misinformation and emphasises the importance of communication and collaboration in the field of endometriosis advocacy. In this conversation, Heather Guidone BCPA discusses various aspects of endometriosis, including critical thinking, realistic expectations, misconceptions and stigma, the need for an internationally recognised definition of expertise, resources and support for patients, and the impact of advocacy and compassionate physicians. Takeaways When exploring alternative treatments for endometriosis, it is important to think critically and be cautious of claims that sound too good to be true. Endometriosis is often misunderstood and stigmatized, leading to a lack of proper care and support for patients. There is a need for an internationally recognised definition of endometriosis (surgeons/specialists) and expertise in the field to ensure consistent and effective care for patients. There are various resources and support available for endometriosis patients, including educational materials, advocacy groups, and healthcare professionals who specialize in the disease. Advocacy plays a crucial role in raising awareness, improving access to care, and supporting patients with endometriosis. Collaboration and compassionate physicians are essential in addressing the complex nature of endometriosis and providing comprehensive care for patients. Chapters 00:00 Introduction to Advocacy for Endometriosis 02:02 The Challenge of Accurate Information in Advocacy 08:49 The Need for Accessible Treatment and Research 13:06 The Importance of Including Patients in Research 14:33 The Accessibility of Treatment for Endometriosis 19:46 The Lack of Resources and Surgical Expertise 26:11 The Progress and Challenges in Endometriosis Advocacy 30:37 Handling Backlash and Criticism in Advocacy 35:52 The Importance of Communication and Collaboration 39:04 Advice for Doctors, Researchers, and Advocates 45:34 The Dangers of Misinformation and Scams 46:43 Critical Thinking and Realistic Expectations 48:19 Misconceptions and Stigma Surrounding Endometriosis 49:45 The Need for an Internationally Recognized Definition and Expertise in Endometriosis 53:12 Resources and Support for Endometriosis Patients 59:10 The Impact of Advocacy and the Importance of Compassionate Physicians 01:02:13 The Evolution of Endometriosis Advocacy and Collaboration Center for Endometriosis Care https://centerforendo.com/ 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 endeavours 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 gynaepathologies 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 endeavours, 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. Additional Reading: The Womb Wanders Not: Enhancing Endometriosis Education in a Culture of Menstrual Misinformation https://www.ncbi.nlm.nih.gov/books/NB...