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Connecting Patients with Science: Highlights from the 2021 International Patient Conference

Connecting Patients with Science: Highlights from the 2021 International Patient Conference

The Endometriosis Foundation of America's International Patient Conference was an incredible opportunity to connect patients and providers around the world. Because of this year's virtual setting, the free sessions were accessible to all. If you missed the conference, check out the recap below and make sure to register for the conference now to gain access to the recorded presentations. 

The conference began on Friday with a welcome message from Padma Lakshmi, the cofounder of EndoFound. She helped set the tone for the weekend, running through the many impressive accomplishments that EndoFound and its volunteers and donors have achieved in the last decade. 

After an introduction to endometriosis by cofounder Dr. Tamer Seckin, the first panel focused on endometriosis in teens. Moderated by Deborah Bush, physicians Dr. Anil Sharma, Dr. Patrick Yeung, Dr. Mike Armour, and Dr. Li Ma ran through the red flags that doctors should look for when considering younger patients and Anna Hagood powerfully told her story as a patient. Dr. Anil Sharma emphasized that pain with menstruation isn't normal, and that providers should be on the lookout for that in young patients. Next, Dr. Tracey Haas and journalist and EndoTV host, Diana Falzone shared firsthand tips about how to speak with a provider and encouraged patients to tell their doctors how endometriosis impacts their quality of life. 

Dr. Mike Armour touched on a hot topic: cannabis and how it can be helpful for endometriosis patients managing pain. After a fascinating presentation about the endocannabinoid system, he handed things over to Dr. Laura Payne who continued the discussion about pain and treatment, explaining that there are cognitive behavioral techniques that can help lessen the anxiety and potentially the pain of living with endometriosis. 

After Jessica Murnane's presentation on diet and endometriosis, a moving panel gave audience members the chance to see real patients' rare cases as well as the perspectives of providers. Actor Kym Jackson then joined the conference to discuss her fertility journey and her decision to freeze her eggs. The night ended with a fertility panel featuring Dr. Zaher Merhi, Dr. Sarah Choi, and Dr. Neil Johnson. The panel ended with a call to be as transparent with patients as possible in order to develop trust in the doctor/patient relationship. 

Day two of the conference took on complex topics like coping with mental health side effects of endo, intimacy, and more. The Trust These Teens session, which focused on the importance of early detection, featured powerful stories from women talking about their experience as teenagers with symptoms and the diagnostic process. Dr. Tracey Haas later covered talking points about communicating with doctors. She emphasized the importance of not giving up, and touched on why both teen patients and doctors need more education. The tone the presenters set was continued throughout the day with segments from endo patients telling their stories, including Christine and Debbie Madigan, a mother/daughter duo dealing with this disease, to Doris Murimi, founder and CEO of Endo Sisters East Africa Foundation.  

Next, presenters tackled the topics of diet and of intimacy. Chef, restaurateur, and author Judy Joo talked about her diagnosis process and then later explored the role that diet can play in a healthy life with endo along with Winne Chan, Lida Ahmady, and Jessica Murnane. Then Karen Robinovitz, as well as partners Nikki Hartzoulakis and Eric Rieloff, shared their heartfelt and powerful stories about navigating relationships when a partner lives with endometriosis. Eric urged all male partners to support their significant others in the battle against endo in a moving call to action. 

The tone shifted as mindful self-compassion teacher Hanne Vedsted-Hansen led participants through a meditative exercise and explored the power that self-compassion can have for those living with a chronic illness. This focus on mental health and thought patterns harkened back to Dr. Payne's talk on Friday. 

After a presentation from Dr. Shaheen Khazali about sciatic nerve pain, Dr. Haas, Dr. Karli Provost Goldstein, Dr. Shaheen Khazali, Dr. Smitha Vilasagar, and endometriosis patients Lori Konecni and Tanya Raymond discussed some of the rarer kinds of endometriosis, including how it can affect the bowel, abdomen, and diaphragm. The last few sessions of the conference spotlighted fertility. Patient Allison Chemla talked about receiving her diagnosis of endometriosis while consulting a fertility doctor and about her journey with pregnancy. Kim Bendheim shared her memories of diagnosis, IVF, and the importance of seeking early diagnosis and treatment for endometriosis. The final panel featured Dr. Provost Goldstein, Dr. Michael Dahan, Dr. Victor Gomel, and Dr. Tomer Singer in conversation about infertility and the options available to couples struggling to conceive. 

This conference was a success, and patients around the world gained access to invaluable information that they can now share with loved ones and providers. The conference is available in its entirety by registering via this link. Here's to next year's conference, which is sure to be another wealth of information.