Endometriosis Foundation of America: ‚ÄčAn Online Patient Community

Margaret Cianci

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As our community knows too well, endometriosis treatment and support is vastly under-funded and it continues to be an incredibly difficult disease to diagnose and treat. People of color face these barriers in higher numbers and are often told that endometriosis is solely a “white woman’s disease.”

We’ve launched The Endometriosis Resource Portal for People of Color in an attempt to change this false narrative. Thank you to Kyla Canzater, Lauren Kornegay, Samantha Denäe, Kanwal Ojha, and Dr. Soyini Hawkins for sharing your diagnostic journeys, tips for managing symptoms, pursuing proper treatment, and advocating for yourself as a person of color with endometriosis. I encourage you to use these videos in conjunction with the Resource Sheet for Endometriosis Patients of Color to arm yourself with as much information and support as you need to receive proper diagnosis, management tools, and treatment. If you’re a person of color with endometriosis and would like to share your story on this portal, please email info@endofound.org

At EndoFound, we’re also delighted to share that Diana Falzone, a journalist with Vanity Fair, Vice Media, and The Daily Beast, has joined us as the director of media relations and advocacy. Welcome, Diana!

In community,

margaret

Margaret Caspler Cianci
Executive Director, EndoFound

The Endometriosis Resource Portal for People of Color
Webinar

In order to combat diagnostic racism, increase disease awareness among POC communities, and help support people of color with endometriosis, we recently launched The Endometriosis Resource Portal for People of Color. Featuring videos from patients and doctors, as well as a patient resources sheet of questions to ask your doctor(s), this resource portal is an ongoing project for people of color who are experiencing pain and suspect they may have endometriosis to receive the correct information and hear from patients who look like them and have had similar experiences.

The Endometriosis Resource Portal for People of Color
Staff Announcement: Diana Falzone
Webinar

Three years ago, after Diana Falzone’s second endometriosis surgery, she and her doctor had a profound conversation. It was a moment so powerful, they were both brought to tears. “He asked me to help him carry the torch to bring awareness to the disease,” said Falzone, a Fox News reporter at the time. “I had the platform and I had the education, so I made a vow that day to him and the one in 10 women who suffer with it that I would fight for them.” After working with EndoFound on numerous initiatives, including helping pass the first bill that would require materials on menstruation be made available to school districts and medical practitioners in NYS, Diana has now been appointed the Director of Media Relations & Advocacy. “I feel quite honored to be part of this team,” Diana says. “We want more research, and we want more tools to deal with the disease, but to do that, we need more awareness. I hope to shine a light on the disease and the stories that haven’t been told.”

Read More
Virtual Patient Conference Preview: Dr. Laura Payne
Webinar

This year’s Virtual Patient Conference will feature a wide range of topics critical to proper endometriosis care, including the importance of mental health. Dr. Laura Payne, PhD, is a clinical psychologist and the Director of the Clinical and Translational Pain Research Program at McLean Hospital/Harvard Medical School and will be speaking on mental health and pain tactics. Her research focuses on identifying neurobiological, behavioral, and psychological biomarkers related to menstrual pain. If you missed our webinar on endometriosis and COVID-19, Dr. Payne shared helpful tips on how to take care of your mental health during this unprecedented time.

Register for Virtual Patient Conference
Researcher Spotlight: Scar Tissue Formation
Webinar

EndoFound spoke to Khash Khazaie, PhD, DSc and Zaraq Khan, MD at the Mayo Clinic, about their project that was awarded a 2019 EndoFound grant, which explores the genetic basis of scar tissue formation in endometriosis. Through their research in mice, they've discovered that scarring is likely to result from a combination of inherent mutations in endometriosis lesions and the type of immune responses created against those mutations. Dr. Khazaie and Dr. Khan hope that this work will help us better understand how the immune response interplays with endometriosis, and that it leads to the development of a therapeutic target.

Researcher Spotlight
Endo 101: How to Find the Right Endometriosis Doctor
Webinar

More Endo 101 from our Ask Harry Archives! This week, Dr. Harry Reich, MD, FACOG, FRCOG, FACS, shares tips for how to find the right endometriosis doctor. “You need to see an endometriosis surgeon who does not use the robot,” Dr. Reich advises. “Remember that the robot cannot feel tissue. The surgeon uses only his eyes and removes what he sees, not what he feels.”

Ask Harry
The Mrs. America Contestant Fighting For Endo Patients Everywhere
Webinar

Stacey Brauss, endometriosis patient, nurse, and Mrs. America Contestant, has been advocating for endometriosis support and treatment since she was diagnosed with stage IV endometriosis nearly 20 years ago. Now, she’s competing in the Mrs. America pageant in Las Vegas under the platform “End Endo.” Her goal? To bring awareness to and eventually find a cure for endometriosis. Even in her senior year of nursing school, Stacey was shocked to have never heard of the disease. “I later found one paragraph about it in one of our textbooks,” Stacey says. “I told my instructor that this had to change.”

Stacey’s Story

Do you have a birthday coming up? Celebrate with EndoFound! Click here to set up your Facebook birthday fundraiser. From birthday fundraisers on Facebook to running 5Ks, you make it happen. With your help, we can continue working towards increasing endometriosis awareness, education, advocacy, and research. Thank you to everyone across the country who has fundraised in support of endometriosis!

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