Endometriosis Patients Demand Awareness

Endometriosis Patients Demand Awareness, Research, and Better Treatments: Sufferers Share What Works
Written by Editor Choice
Thursday, 06 November 2008
Often misdiagnosed and left to temporary treatment options, Endometriosis patients are now feeling more empowered than ever to spread awareness for the under-researched condition. Dancing with the Stars performers Julianne Hough and Lacey Schwimmer made publicly respected decisions to announce their current struggles with Endometriosis despite advisers’ recommendations to cover it up. One recent user commented to Hough on her website, “I think that people dont understand the pain we go through on a daily basis and think we are making it up. When I went back to work people actually understood my condition better because of you.” Women around the world are coming together to stand up for awareness and help each other online.

Endometriosis patients now have more than a chat room or discussion board, they are crowding around http://www.curetogether.com/Endometriosis/ to quickly find the most recent reviews on treatments, compare symptoms, and discover related conditions anonymously. It is estimated there are 89 million women world-wide who suffer from Endometriosis. Julia Meggitt, one of the members that come from 40 different countries at CureTogether’s research forum, commented on immediate benefits from the data: “It was very interesting to see all of the other symptoms that other women were having. It’s nice to know I’m not alone or crazy.” By checking-off symptoms and treatments, members can see automatic percentages of how they compare and instantly learn new things from other patients. While immediate benefits are gained, the anonymous aggregate data contributes to future studies. The site promises even more cures and better treatments with an upcoming update to let patients graph symptoms over time.

CureTogether is about real-time data and crowd-sourcing cures as the website itself clearly states: “We believe the secrets to understanding and ultimately curing diseases are locked away inside the bodies of each person who has a condition.” The site recently added a new feature to allow people to share what exacerbates the pain, such as childbirth, and to connect related conditions such as Fibromyalgia. Free tools not only enable patients to take control of their health, but also empower them to be their own researchers. In no way does CureTogether circumvent doctor’s orders, but with healthcare continuing to fail endometriosis sufferers, more and more patients are turning to research and reaching out to help one another.

Patients interested in comparing symptoms, discovering new treatments, tracking their condition, and further researching cures, please visit: http://www.curetogether.com/Endometriosis/