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9/21/2018 0 Comments Using our voices, our stories and campaigns to provide insight into NCDs and their impact.
9/20/2018 0 Comments Grateful to be part of this amazing group and to have endometriosis represented in amplifying voices for people with NCDs at the United Nations High-Level Meeting.
4/5/2018 0 Comments Have you had ENOUGH? Let's join together and change policy by sharing our voices for the upcoming UN meeting on NCDs.
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.”
3/1/2018 0 Comments March is Endometriosis Awareness month and the world has lit up in support as many march around the world.2/1/2018 0 Comments Honored to advocate for endometriosis to be included in policy at for the 2018 UN NCD Meeting. The NCD Alliance invited 34 people living with NCDs from 22 countries to come together in Geneva for the Our Views, Our Voices campaign.
Endometriosis advocacy and experts are contributing to defining correct classification for endometriosis for the World Health Organization ICD-11 Codes. This will advance understanding into illness awareness, doctor skillset and insurance clarity.
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 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. Workshop in Geneva: https://ncdalliance.org/news-events/news/together-we-are-stronger NCD Alliance: ncdalliance.org/news-events/news/advocacy-agenda-of-people-living-with-ncds-takes-centre-stage Data: public.tableau.com/profile/william.guicheney#!/vizhome/OurViewsOurVoicesOnlineConsultationResultsDraft2/Dashboard2 
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.
5/13/2017 0 Comments The microbiome and illnessThe medical field is diving head on into the connection between your microbiome (Immune System) and chronic illness. Innovation is acceleration change. From gathering data and research to the understanding of diet and environmental factors that effect illness are being studied.
Gathered patient-diagnosed data and symptom information to provide a platform and voice for the women and girls who feel there is a lack of understanding in the medical field with endometriosis.
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 UN-diagnosed 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.
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