The objective of the Health Literacy Community is to build expertise and improve the policy development process by gathering current and emerging information from all WHO regions and organizing it in one place. It will also provide a forum for community members to interact on the basis of those materials from time to time as the need arises.
Endometriosis is a NCD - a noncommunicable disease that effects over 176 million women. People with illness are being part of the conversation over policy and action that influences their lives. I was fortunate to represent women with endometriosis with my story and health information in Geneva to define the agenda for updates to policy for the 2018 United Nations - High Level meeting. It was amazing working with this amazing bunch.
NCD Alliance: ncdalliance.org/news-events/news/advocacy-agenda-of-people-living-with-ncds-takes-centre-stage
We are at a time where patient advocacy is making waves to update the standard of care for endometriosis. One of the key issues in delayed diagnoses is a lack of knowledge among physicians, the petition claimed, citing an article on the ACOG: The American College of Obstetricians and Gynecologists website by its current president, Dr. Tom Gellhaus. In it, Gellhaus notes that 63 percent of general practitioners are not comforatable in diagnosing and treating endometriosis, and up to 50 percent are unfamiliar with the three main symptoms of the disease. “Educated patients, dedicated advocates, and expert endometriosis practitioners strongly believe that ACOG is not acting as a leader in endometriosis healthcare,” argues the petition, written by Casey Berna. “The lack of institutional leadership has caused suffering for patients in the form of delays in diagnosis and poor access to effectual care.”
Personal stories reflect the need to have endometriosis join the conversation on NCD policy and action with the World Health Organization. SHARE YOUR STORY: apps.who.int/ncds-and-me/
Now that we understand that endometriosis can be found on every system of the body, there is an educational need to train Doctors to remove endometriosis from multiple organs. Laparoscopy and VATs virtual reality training could help women heal correctly and not have to have multiple surgeries due to skill. We are looking into ways to generate VR specific for endometriosis.
More than just video games and movie: transformaing healthcare through VR Simulation: today.mims.com/transforming-healthcare-practices-through-vr-simulations
EndoStats infographics was featured in the news story that voiced what women go through living with and fighting for awareness to the painful, crippling illness of endometriosis.
News Story: www.nbcbayarea.com/news/local/Not-Over-Until-I-Die-Bay-Area-Women-Speak-Out-About-Endometriosis-415696383.html
While doing research to understand what what going on with my health, Shannon Cohn brought to life what we endure in the medical field and society with endometriosis in the film EndoWhat.com. Supporting this production with Indiegogo and bringing awareness to thousands of women, professors and doctors.
After being diagnosed in 2001 and then Misdiagnosed in 2015, I did my own research and discovered not only do I have endometriosis but also thoracic endometriosis. I thought I was rare but realized that 68% of women were being misdiagnosed. There are many myths about this illness out there and I wanted a place for women and girls to be able go to for honest, simple endometriosis information.