Heather Guidone, BCPA (She/Her)
Chronic Conditions: Endometriosis, Adenomyosis, Fibroids, Hashimoto's Thyroiditis, Hypothyroidism, Fibromyalgia
When I finally learned I had endometriosis in the 1980s after years of symptoms, I had never heard of it. I was told, ‘Well, we have a diagnosis - but the bad news is you’re probably not going to get any better, and oh, by the way, you should schedule a hysterectomy immediately’ - in my late teens. From that point on, life became a series of repeated failed surgeries, medical suppression with devastating side effects, and a lack of understanding from everyone around me. After finally saying 'enough,' I took my care into my own hands and flew 1,000 miles to a specialist, who essentially saved my life and restored my ability to get out of bed. Throughout my journey, it has been my overarching goal to ensure others who come behind me do not have to suffer through such dismissal, trivialization and poor treatments as I did.
As the Program Director of the Center for Endometriosis Care and a Board Certified professional Health Advocate with a specific focus on endometriosis and pelvic pain gynepathologies, I’ve worked across the 'bench to beltway to bedside' spectrum in endometriosis education, research facilitation, legislation and policy reform, and care access for about thirty years, but more importantly, am also someone who has personally struggled with advanced endometriosis, fibroids, adenomyosis, and infertility. My lived experiences bring a unique perspective to my professional works and fuel my continued passion to effect change to the way this disease is researched, treated and publicly perceived. By ensuring stakeholder representation in order to improve outcomes for future generations and creating space for patient voices in all places where decisions are being made about us, it is my enduring goal to serve as an ally for all.