(c) Toronto Endometriosis Network
Heather Guidone is the Director of the Center's Surgical Program, responsible for patient-centric care, clinical research facilitation, education, and public policy endeavors to achieve strides in and promote better care for endometriosis. She is a Health Educator, a Medical Writer, an Activist, an Industry Liaison, a passionate Advocate, a Research Co-Investigator & Coordinator - - and most importantly, an individual who knows the disease inside and out first-hand. As a woman who experienced Stage IV endometriosis, 'frozen pelvis', adenomyosis, leiomyoma and years of heartbreaking infertility, she subsequently possesses not only professional and practical capabilities, but also the unique perspective of the pain, devastation, isolation and missed opportunities that often accompany the disease, which only those who struggle with it can truly ever understand. She can also personally speak to the vast benefits of quality Excision surgery as a cornerstone of treatment for endometriosis, having finally undergone successful LAPEX - after years and years of countless, failed surgeries and medical therapies which left her with significant and damaging side effects (her story appears in more detail at TalkHealth). Her life has long been dedicated to assisting as many individuals affected by endometriosis and pelvic pain as she can, and her relationships with many of the Center's patients continue long after their surgeries are completed. Her priority focus is on reducing the time to diagnosis/effective treatments and improving outcomes, collaborative network building among multidisciplinary providers, and raising the clinical profile of endometriosis among healthcare providers and the public alike. She considers herself incredibly privileged, blessed and fortunate to have the best teachers and mentors in Dr. Sinervo and Dr. Albee - - but the entire CEC team considers its patients as the foremost teachers of all.
A Clinical Healthcare Educator with a dedicated focus on reproductive gynepathologies - specifically endometriosis and pelvic pain - she has served the women's health community for more than twenty years, striving for positive progress in the disease and women's reproductive health. Once called "one of the loudest voices in endometriosis," she is known for her passionate, extensive work throughout the global disease community. She manages the Center's advanced Laparoscopic Surgical Excision (LAPEX) program, specializing in 'bench to beltway to beside' efforts encompassing disease education, research facilitation, health policy reform and patient-centered caregiving. 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 and CITI-certified Research Co-Investigator, she teaches, raises awareness and fights 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 award-winning corporate wellness initiatives; before legislators, insurers and medical expenditure and payer panels; in partnership with select (non-pharma) industry partners; and among many others including at various international health and medical conferences.
She strongly believes in unity among those fighting for better care worldwide and feels that collaboration is key, and is gratified to be part of the global network of like-minded supporters, activists, educators and practitioners all striving for positive progress in the disease - collaborators 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 disease should EVER feel alone or hopeless.” Heather considers it “an absolute honor and privilege” to serve 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 the disease as a public priority by bridging the gap between science and shareholders - so others will not suffer as those who came before them. Above all, she wants individuals 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, Membership Affiliates & Board Appointments
The CEC team strives to leave a legacy of improved care by teaching, advocating for, and networking with others for the improved care of those with endometriosis. Thus, subsequent to her primary (and much-loved!) role in the CEC, 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 maximizing brand, from defining gaps in existing programs to the development, expansion and enhancement of clinical services designed to improve delivery of care and education, and much more. Ms. Guidone has also donated her time to countless organizational and charitable endeavors for the disease for decades, most notably the Endometriosis Research Center, wherein she has served as a volunteer Member of the Executive Board of Directors since the organization was founded in 1997.
Long before the days of the Internet and Social Media, she worked tirelessly throughout the late 80s and early 90s to establish awareness for the disease, educate the public in local communities and facilitate outreach efforts, in what was then a very isolated environment with little cross-talk and sorely limited collaboration between stakeholders. An outspoken professional advocate, she has appeared in countless media over the past 23 years, 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 consulting Director of Education & Industry/Research Liaison, helping to implement the organization's founding mission and goals in its infancy. 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 recently served out her two-year, elected appointment on the Executive Board of the American Society for Reproductive Medicine's (ASRM) Women’s Council. She has been previously appointed to the prestigious President's Council of the National Patient Advocate Foundation (NPAF) in Washington, DC, on which she still serves. NPAF is 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.
Heather is an active 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, a charitable endeavor devoted to bringing together professionals, patients, payers, researchers and others to foster collaboration to improve research, patient empowerment, and health policy, as well as publish the academic Journal of 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 was 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 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 Reviewer for the BMJ (formerly British Medical Journal). Heather was elected to membership in the National Association of Healthcare Advocacy Consultants (NAHAC), the country's leading non-profit organization of professionals who share the goal of promoting safe, effective and humane healthcare services, where she remains active. NAHAC members, who must adhere to a strict Code of Ethics, collectively strive to improve the way consumers interact with the healthcare system by supporting public education efforts to foster effective advocacy through complex medical situations; work on legislative and health policy initiatives; and on behalf of dedicated disease-specific populations. In addition to authoring CME, she also maintains many hours herself each year and holds various clinical and professional Certifications, ranging from PeriOperative Standards & Recommended Practices to Operating Room Protocols, from Health Education to Minimally Invasive Surgery Protocols, from Med-Surg, Anatomy & Physiology to Healthcare Journalism, Medical Writing, Healthcare Management and much, much more from respected institutions as Rutgers University School of Adult Continuing Education, Sacramento State College of Continuing Education and Columbia University School of Professional Continuing Education. She has also achieved Certification in Human Research via CITI Training for Human Subjects & Data Specimens at the University of Miami Leonard M. Miller School of Medicine.
While Heather maintains her much-loved role in the CEC's various clinical and research endeavors, she also considers nothing more important than patient connections. "All the science in the world will not replace empowering relationships with others who understand," she states. "We must also focus on enhancing patient's lives in a meaningful way through true, interpersonal connections - sometimes, hearing 'I get it' is more powerful for an individual in that moment than any investigation that may be going on...sometimes, people just want to be heard and believed - and have someone say, 'it will be ok.''" She is also a nationally Certified Clinical Coach 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 navigate and improve health literacy, clinical decision-making skills and effective self-management. Heather also served as lead author on, among many other modules, the most robust and 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]. She is frequently invited to lecture at events and contribute content to prominent books and publications on health and advanced gynecology, including the Journal of Women's Reproductive Health, the Journal of Gynecologic Investigation and more. She has consulted for nearly two decades to the country's foremost biomedical communications firm, serving as a lead Clinical Education Medical Writer and Advisor 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, and 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 Global Consensus on the Management of Endometriosis [Johnson, Hummelshoj, et al. Consensus on the Current Management of Endometriosis. HumReprod. 2013 Mar 25].
She previously served throughout the early 1990s as a Consultant to America Online in their then newly-launched women’s health division, and wrote an invited, nationally syndicated column for ThriveHealth. She 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 “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 at the country’s first national March on Washington for Endometriosis in 2000. She received recognition for her work in endometriosis through two awards given to her by the Nezhat Foundation at their annual EndoMarch in Washington, DC in 2014. 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 study on tampons, orgasm and endometriosis. She has been profiled in a number of publications, ranging from featured segments in Dow Jones Media to industry sales force panels.
She continues to serve a cross-organizational initiative for the global establishment of multiple ‘Centers of Expertise’ 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 co-authored the text contained in various endometriosis legislative Awareness Resolutions passed by local and national lawmakers, including House Concurrent Resolution No. 291 (2001). HConRes was unanimously passed on the floor by the 107th Congress of the United States and was the first to officially and formally recognize March as Endometriosis Awareness Month. 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 honored by the National Women’s Health Foundation with their coveted “Passion for Pelvic Health” championship award, given in acknowledgment of her lifetime contributions to women's health. Calling it “a celebration of ALL individuals with endometriosis who struggle to be heard every day,” she accepted the honor on behalf of all those with the disease at the Foundation's annual sold-out Below the Belt gala, telling the 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 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 and other endeavors with international thought leaders, to lobbying payers for proper coverage of disease treatment and legislative advances, she continues her work 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, agenda-free, 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. She readily credits famed endometriosis advocate of nearly five decades, Nancy Petersen RN, with mentorship, along with Dr. Albee, Dr. Sinervo and many other early pioneers, all of whom she says changed the direction of her own life for the better and continue to inspire her. She strives every day to honor them by using her passion to try and help others any way she can.
Heather feels absolutely blessed, honored and privileged to be a CEC team member and to work for, by and with 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.