Heather Guidone & CEC Founder, Robert B. Albee, Jr. MD
Photo by Kenya Turner
The CEC's Heather Guidone is a Program Director, health educator, writer, activist, advocate...and a woman who knows the disease inside and out, first hand. A Clinical Health Educator and author with a dedicated focus on reproductive gynepathologies - specifically endometriosis and pelvic pain, she has served the clinical and consumer health industries for more than two decades in various capacities, striving for positive progress in endometriosis. Once called “one of the loudest voices in endometriosis”, she is known for her passionate, extensive work throughout the global disease community. Heather manages the Center's advanced Laparoscopic Surgical Excision (LAPEX) program, specializing in disease education and patient-centered care. She is also a woman who experienced Stage IV endometriosis, 'frozen pelvis', adenomyosis, leiomyoma and years of infertility. Subsequently, in addition to her professional capabilities, she possesses the unique perspective of the pain, devastation, isolation and missed opportunities that often accompany the disease...which only those who struggle with it can understand. She can also personally speak to the vast benefits of quality excision surgery as the cornerstone of treatment for endometriosis, having finally undergone successful excision 17 years ago - after years and years of countless, failed surgeries and medical therapies which left her with significant side effects. Her story appears in more detail at TalkHealth. Heather's life has long been dedicated to assisting as many individuals affected by endometriosis as she can, and her relationships with many of the CEC's own patients continue long after their surgeries are completed. Her priority focus is on reducing time to diagnosis/effective treatment and improving outcomes through patient-centric care, collaborative network building among multidisciplinary providers, and raising the clinical profile of the disease among providers and the public alike.
She can be found in the CEC’s operating room, anchoring a number of off- and online education, research and support initiatives, and lecturing on the disease far and wide. A MIGS/pelvic pain educator, Heather continues to teach, raise awareness and fight for policy changes in community, corporate, school/university, hospital, media and healthcare settings on both the clinical and consumer sides, including in Nursing Schools and Residency Programs; in university, high school and elementary classes; for Deloitte & Touche's award-winning corporate wellness initiative; before legislators, insurers and medical expenditure panels; for OmniGuide Surgical; and many, many others including various health and medical conferences. She strongly believes in unity among those fighting for better care and feels that collaboration is key to advancing the disease, thus she is gratified to be a part of the global network of supporters, activists, educators and practitioners, whom she calls 'her daily inspirations.' "My wish is for every individual with endometriosis to be able to make empowered choices about their own care," she says. “No one with this painful illness should EVER feel alone or hopeless.” Heather considers it “an absolute honor and privilege” to serve those in the global endometriosis community; she has long been dedicated to helping improve quality of life for the affected by increasing access to quality excision surgery, promoting disease education, facilitating research, elevating endometriosis as a public priority and bridging the gap between science and shareholders...so others will not suffer as those who came before them. Above all, she wants individuals with the disease to know that there is always hope. "There is nothing more devastating than thinking things will never improve; worse than the times I was bedridden and crippled by pain were the times that I lost hope," she said. "So I want others to know that there is a light at the end of that tunnel, and they should hold on even - and especially - in their darkest of days."
Professional Activities & Board Appointments
Subsequent to her primary role as the CEC's Surgical Program Director, Heather is extensively involved in the MIGS/Laparoendoscopic surgery, biotech, clinical and research communities. In addition to networking with patient and professional constituencies to establish research projects, focus studies, new product development and clinical trials, she also provides a number of comprehensive services to the women’s pelvic pain and gynecologic health industry, ranging from patient relationship optimization to the development, expansion and enhancement of clinical services designed to improve delivery of care and education. Ms. Guidone has also donated her time to countless organizational and charitable endeavors for the disease, most notably the Endometriosis Research Center, wherein she has served as a volunteer Member of the Board of Directors since 1997. An outspoken advocate for the disease, she has appeared in countless media including on the Emmy® Award-winning Lifetime Television network in a feature segment on endometriosis, broadcast to the network's 98 million subscribers. She has held numerous consultancies with many global institutions over the years including Tamer Seckin, MD's and celebrity Padma Lakshmi’s Endometriosis Foundation of America, wherein she served a three-year term as the consulting Director of Education & Industry/Research Liaison, helping to implement the organization's founding mission and goals. She is also pleased to donate her time to the world's leading disease portal, Lone Hummelshoj's endometriosis.org, as an Associate Editor, and previously served out a two-year, elected appointment to the Executive Board of the American Society for Reproductive Medicine's (ASRM) Women’s Council. She was appointed in 2013 to the prestigious President's Council of the National Patient Advocate Foundation (NPAF), the leading national non-profit organization in the United States exclusively devoted to engaging members of Congress, the Department of Health & Human Services and various coalitions to coordinate efforts to implement and support legislative and regulatory remedies to obstacles to healthcare access at the state and federal levels. Additionally, she was one of the two exclusive invitees to Co-chair and present for the first time on endometriosis in Washington, DC to the legislature at the annual Women in Government's Health Summit. That critical event, lauded by state and federal legislators alike, led to the creation by the Women in Government Foundation of the first-ever “Toolkit” now used in the United States by legislators.
In addition to the NPAF, she is also a member of the American Academy on Communication in Healthcare; the Society for Menstrual Cycle Research, wherein she has served as a keynote speaker on endometriosis as a critical component of women's menstrual health; the Society for Participatory Medicine, the ASRM Special Interest Groups on Endometriosis, Contraception, the Environment & Reproduction, Imaging in Reproductive Medicine, Nutrition, Menopause, Pediatric & Adolescent Gynecology, and Female Sexuality; the Society of Laparoendoscopic Surgeons' Endometriosis Special Interest Group; the National Association of Chronic Disease Directors, the Association of Reproductive Health Professionals, wherein she has been appointed to teach the CEC's course on the importance of collaborative, compassionate care among healthcare providers for gold-standard treatment of endometriosis at ARHP's upcoming annual congress (the first course of its kind in the organization's history); AAGL (formerly known as the Association of Gynecologic Laparoendoscopists), wherein she sits on the AAGL Special Interest Groups for Endometriosis and Pelvic Pain and serves as a Congress Abstract Reviewer; as well as many other professional societies. She is also a Peer Reviewer for the BMJ (formerly British Medical Journal). Heather routinely participates in a number of pelvic health, reproductive care and female patient education cross-collaboratives across the globe and holds various clinical and professional Certifications, ranging from PeriOperative Standards & Recommended Practices and Operating Room Protocols, Health Education, Minimally Invasive Surgery Protocols to Med-Surg, Anatomy & Physiology, Healthcare Journalism, Medical Writing, Healthcare Management and more from such respected institutions as Rutgers University School of Adult Continuing Education, Sacramento State College of Continuing Education and Columbia University School of Professional Continuing Education. In addition to authoring CME, she routinely maintains extensive continuing education on endometriosis and women's reproductive health herself, earning credit hours through AAGL, ASRM, AORN, ARHP and other certified CE providers. She is also a nationally Certified Clinical Wellness Coach (CWC) trained in application of the Transtheoretical Model to Health Education, assisting individuals in securing a more empowered, patient-centered approach in their treatments by helping them to improve their health literacy, clinical decision-making skills and self-management. Recently, she also served as lead author on the most robust, authoritative monograph produced in the United States to date for medical school faculty and physicians to use to supplement training of residents and students, and for healthcare providers to use to enhance their knowledge of endometriosis-related care [Diagnosis & Management of Endometriosis: Pathophysiology to Practice. Association of Professors of Gynecology & Obstetrics, 2013].
Heather is frequently invited to lecture at events and contribute content to prominent books and publications on health and advanced gynecology, including most recently the newly-launched academic Journal, Women's Reproductive Health. She has also worked with the country's foremost biomedical communications firm for nearly two decades as a Clinical Education Medical Writer and Consultant on a myriad of accredited Medical Education (CME) healthcare modules. She has developed countless endometriosis, gynecologic surgery, complications of pregnancy, infertility, breast cancer, reproductive and other general women’s health education modules in both the consumer-oriented and professional sectors of the health industry. Her work has been featured in innumerable publications and resources ranging from the National Women with Disabilities Task Force and Health.gov to the Association of Professors of Obstetrics & Gynecology (APGO) and electrosurgical training manuals, from RedBook and Cosmopolitan Magazine to Dr. Oz's Sharecare and many more. She also ghostwrites and consults for several prominent academic and medical leaders, and serves as Editor for numerous lectures and countless slide kits, scripts and more presented at various symposia and international meetings. Additionally, she has authored immeasurable disease education materials used by various endometriosis organizations across the globe. As a member of the World Endometriosis Society Montpellier Consortium, comprised of 56 representatives from 34 universal organizations, she also contributed to the first Global Consensus on the Management of Endometriosis [Johnson, Hummelshoj, et al. Consensus on the Current Management of Endometriosis. HumReprod. 2013 Mar 25]. She also previously served throughout the 1990s as a Consultant to America Online in their then newly-launched women’s health division, and wrote an invited, nationally syndicated column for Thrive@Health. Recently, she was honored and privileged to meet with internationally renowned researchers, the Dean and award-winning Faculty at the University of Houston's Health Sciences, Biomedical Engineering and Center for Nuclear Receptors & Cell Signaling divisions regarding their pioneering scientific efforts and to promote a university-wide translational research initiative.
Heather is often sought by media and advocacy groups for her expertise and activism in reproductive health, endometriosis and chronic pelvic pain pathologies, and is routinely invited by others to edit, contribute content to, endorse and provide forewords to their own publications, including "Coping with Endometriosis" by Glenda Motta, RN, MPH and Robert Phillips, Ph.D., "Living well With Endometriosis" by Kerry-Ann Morris (HarperCollins), the best-selling "Endometriosis: 100 Questions & Answers" by David B. Redwine, MD, Dr. Susan Evan’s critically acclaimed “Endometriosis & Other Chronic Pelvic Pain” and most recently, “Healing Painful Sex" by Deborah Coady, MD and Nancy Fish. Her own "Letter from Survivors," a poignant insight into the life of the endometriosis patient, has received international acclaim and been extensively shared by more than a million and a half unique sources, both online and off, and was presented on the steps of the Lincoln Monument in Washington, DC at the country’s first national March on Washington for Endometriosis in 2000. Additionally, her work in healthcare was featured in the book, "Real People, Real Stories: How the Internet is Touching Lives." She routinely appears as an invited guest on many media outlets both online and off, including radio shows and press features dedicated to women’s health and infertility. She has been called upon to dispel disease myths and debunk outdated recommendations as well, promoting evidence-based medicine for timely diagnosis and efficacious intervention; including but not limited to co-authorship of an invited rebuttal to Yale University's popular study in the Journal of Gynecologic & Obstetric Investigation [Guidone, Marvel. Sexual Activity, Orgasm & Tampon Use are Associated with Decreased Risk of Endometriosis. Gynecol Obstet Invest. 2002;54(2):64-5]. She has been profiled in a number of publications, ranging from Atlanta's popular Season Magazine to Lifetime TV's award-winning network to a feature segment by Dow Jones Media.
Heather continues to serve a cross-organizational initiative for the global establishment of multiple ‘Centers of Excellence’ for the research and surgical treatment of endometriosis, and has a committed interest in early intervention among the adolescent pelvic pain population. To that end, she continues to teach about endometriosis, from 7th/8th grade to university to post-grad level to media outlets, and routinely presents at associations, corporate, community and other health-related symposia. She was also responsible for the planning and execution of Padma Lakshmi's First Annual School Nursing Endometriosis Education Conference - the first event of its kind to ever be held in the United States - in late 2011. She also chaired the Foundation’s annual scientific conference in 2011. A strong advocate for legislative and insurance industry reform in endometriosis in order to minimize the ubiquitous barriers to care that exist in endometriosis and chronic pelvic pain, she continues to promote testimony at state and federal levels, including data concerning dioxin exposure read before the California State Legislature at the invitation of the general Assembly in support of AB2820 (a consequential bill calling for the independent investigation of toxins in feminine hygiene products). She also co-authored the text contained in various endometriosis legislative Awareness Resolutions passed by local and national lawmakers, including House Concurrent Resolution No. 291, the first-ever National Endometriosis Awareness Resolution. The Resolution was unanimously passed by the 107th Congress of the United States, and was the first Legislation to pass in the United States acknowledging March as Endometriosis Awareness Month. She was honored to be invited by the Nezhat Family Foundation in early 2014 to attend their first annual EndoMarch in Washington, DC in advisory capacity, wherein she received two awards for her work in the community. Heather has also been included in "Who’s Who among American Women" and is a former member of OBGYN.net's Women & Patients Advisory Board, as well as the previous editor of EndoZONE and Endometriosis Pavilion sites. She has also, for nearly 20 seasons, served as an invited judge for the National Health Information Resource Centers celebrated "World Wide Web Health Awards" Program. In 2012, she was chosen by the Office on Women's Health in the U.S. Department of Health & Human Services as their “Spotlight on Women’s Health.” She is most proud, however, of being awarded the 2012 National Women’s Health Foundation’s “Passion for Pelvic Health” championship award, calling it “an acknowledgement of ALL individuals with endometriosis who struggle to be heard every day.” Upon accepting in honor of those with the disease at the Foundation's annual Below the Belt gala, she told the sold-out audience "...despite 176MM individuals suffering in silence from this insidious disease, endometriosis remains largely regarded and treated like the proverbial neglected stepchild of gynecology across the medical community. The time to realize the unfathomable impact of this disease across our global society on a personal and financial level is NOW."
Outlook for the Future
Having spent more than two decades in the industry, Heather’s tireless passion continues, driving her efforts across the patient support, advocacy, surgical and scientific agendas - both behind the scenes and out front. From writing substantive content to educating healthcare providers and the public, from coordinating research studies with international thought leaders to lobbying insurance companies for proper coverage of disease treatment, she continues her endeavors to meet the domestic and international demands of the reproductive health community across the global sector, contributing to like-minded initiatives in order to promote advances in the “art and science” of the disease. Heather will do all she can to help any individual affected by the disease and believes in the power of transparent, apolitical collaboration across all aspects of endometriosis. She eagerly awaits the day when 'endo' is a household word, quickly diagnosed and readily - effectively - treated so it does not continue to debilitate yet another generation of individuals.
Heather feels absolutely blessed, honored and privileged to work for, by and with the CEC and all those affected by endometriosis. She maintains her dedicated commitment to serving the needs of any individual around the world who may be struggling by endometriosis - and those who care for them - through her collaborative efforts, and invites contact from anyone wishing to learn more about the CEC via email at Heather@centerforendo.com or by calling the Center toll-free at 866-733-5540 (outside the United States, +770-913-0001) – or join the CEC on our social media platforms at Pinterest (http://pinterest.com/ctrforendocare), Twitter @CtrForEndoCare, LinkedIn and Facebook at http://www.facebook.com/centerforendometriosiscare.