EndoFound’s annual Patient Conference is officially under way, and going virtual has done nothing to dampen the spirits of presenters and attendees. It's clear why this community event is essential as it brings providers, patients, and loved ones together in one place to talk about the issues affecting us.
Things kicked off with a welcome by moderator Diana Falzone, EndoFound's Director of Media Relations and Advocacy. Margaret Caspler Cianci, executive director of the Endometriosis Foundation of America, reminded attendees watching around the world that in these uncertain times it's even more important to come together. After running through EndoFound's advocacy programs, Cianci introduced Padma Lakshmi and Dr. Tamer Seckin, the co-founders of EndoFound. Dr. Seckin concisely explained why he's spent the last 30 years fighting endometriosis simply, reminding us that, "Men share women's lives and care for those with endometriosis." Endometriosis has no gender confines—it impacts us all.
The first session, Endometriosis 101, reminded folks of all genders why we're here. Dr. Karli Goldstein ran through basic symptoms and emphasized the fact that 1 in 10 women—if not more—live with endo. Dr. Soyini Hawkins encouraged attendees to never downplay their pain or symptoms when speaking with a doctor.
Things got personal with the keynote as actress and patient advocate Lexie Stevenson shared her story. Her harrowing struggle with endo was vulnerable and really resonated, as so many endo patients face pain and fear in the ER before ever receiving a diagnosis. She had self-care tips for everyone to try, from working out through the pain to building a solid support system of people who can recognize and respond to the signs of a flare-up. As she wrapped up her talk, she offered some beautiful advice for the most challenging moments: when you're struggling or afraid, "Put yourself into [the shoes] of someone strong you admire and look up to." Soon you won't be channeling the strength, you'll embody it.
On the heels of Lexi's diagnosis story came the aptly-timed session with Dr. Tracy Haas on speaking to your doctor about endometriosis. After sharing her own diagnostic story, Dr. Haas shared hard-earned and practical tips for making a provider hear you and encouraged patients to find a doctor who listens carefully.
Friday's events set the tone for what will be an information-packed weekend. Tomorrow will focus on supporting your body and building your community with sessions on advocacy, diet, and coping with endo at every age. Sunday's topics include mental health, endo after menopause/hysterectomy, endo outside of the pelvis, and finding happiness with a chronic illness.
Endometriosis can make us feel alone, like no one can understand our pain or empathize with what we go through. The Patient Conference is the tonic for those feelings of isolation. In a year marked by uncertainty and anxiety, this is the perfect time to tap into this community's resilience.
Please consider donating to the EndoFound in the next 24 hours to be part of the We've Met Our Match campaign. If EndoFound hits $10,000, an anonymous donor will match the money and enable many more people to benefit from EndoFound's work.