Share Your Story : Amy

A woman at a music concert

Amy was 29 years old when she learned she had Endometriosis.  Now 38 and living in New Jersey, she has turned her personal battle with Endometriosis into a campaign to help others.

Amy’s Journey: My first memory of my cramps was when I was just 14 years old. I was on vacation with my family in Florida at my Grandmother’s house. We were there for a fun family vacation. However, my cramps were so bad that my mother insisted that I do a shot of brandy to warm my insides up. I was only 14! That is how my period started and it has continued to affect my life on a constant basis.

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Why I support the Endometriosis Foundation of America

Bloomin' Uterus logo surrounded by question marks

Based on yesterday’s post about the Endometriosis Foundation of America donations, some of you have asked what outreach programs the EFA offers.  What are they doing with the money they collect from donations?  How are they helping raise awareness for Endometriosis?  How are they helping with research?  How are they helping EndoSisters with their disease?

Well, ask and you shall receive!

With their permission, I’ve posted a brief summary of their programs and efforts:

Endometriosis

  • An often painful disease affecting multiple body systems
  • Occurs when tissue similar to the endometrium (lining of the uterus) is found in areas outside of the uterus
  • Approximately 1 out of every 10 people born with a uterus live with endometriosis

The ENdometriosis: Promoting Outreach and Wide Recognition (The ENPOWR) Project

  • The EFA’s school- and community-based education and outreach program, consisting of a 45-minute interactive discussion differentiated for specific audiences
  • Supported by significant grants from the New York State Senate and Department of Health ($650,000 over three years)
  • To date, the ENPOWR Project has made 310 presentations to sites throughout New York City, Long Island, Albany, Syracuse, Rochester, and Westchester, reaching over 7,400 adolescents
  • ENPOWR has a 91% return rate to sites

The ROSE (Research OutSmarts Endometriosis) Study

  • The first project in the United States to solely investigate endometrial tissue to the deepest genetic signature
  • The goal of the ROSE study is to investigate the causes of endometriosis and bring improved diagnostics and treatments for women with the disease
  • The EFA’s sponsorship of ROSE at the Feinstein Institute is one of our crowning achievements, and just the beginning of a long-term partnership in endometriosis research

MIT Center for Gynepathology Research

  • Established in December 2009 by Linda G. Griffith, the School of Engineering Teaching Innovation Professor of Biological and Mechanical Engineering and director of the Center
  • The country’s first research center in gynepathology
  • The center is currently working on creating a software application/mobile app to raise disease awareness and to gather better symptomatic data from patients, starting with their first doctor’s visit

Annual Medical Conference

  • An annual gathering of medical professionals to address the controversies surrounding endometriosis, improve treatment options, and to establish that the disease must become a research priority
  • For 3 years, the EFA hosted a Nurses Conference, a separate educational event for nursing professionals
  • Beginning in 2015, our Medical Conference will include all allied health professionals
  • Unable to attend (like myself)?  You can watch (for free!) videos of their past conferences.

Annual Patients’ Day

  • A multi-disciplinary collaboration for women and their loved ones to meet each other, share their journeys, and “ask the experts”
  • The Annual Patient’s Day usually falls within the timeframe of their medical conferences.  

Blossom Ball

  • The EFA’s annual gala and sole fundraising event to support efforts to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research. Each year they host the Blossom Ball as the fundraiser.

The Endometriosis Foundation of America is doing a lot for our disease; not only searching for a cure, but educating women, their loved ones, nurses, and doctors alike.  I hope you can see why I choose to support their efforts through my Bloomin’ Uterus fundraising (the walk, the buttons, and the t-shirt sales).  If you would like to support the EFA, you can either do so through my fundraising efforts or directly through the EFA’s webpage.  Don’t want to support the EFA, but do want to support endometriosis research, education, and awareness?  There are so many organizations out there!  Do the research, find the one you feel best about, and give it a go! 🙂  There are no wrongs or rights here; only action.

Truth, Theory, or Tall Tale?

You may say, “I don’t know anybody that has Endometriosis.”

Theory

One in ten people born with a uterus suffer from Endometriosis.  Many suffer in silence because it can be an embarrassing disease, laden thick with affiliations toward periods, menstrual flow, sexuality, and stereotypes.  Chances are that you know someone who has Endometriosis, or know someone who knows someone that has it.  And you know what else? Famous people have Endo : Whoopi Goldberg, Susan Sarandon, Cyndi Lauper, Dolly Parton, Pamela Anderson, and Hillary Clinton are just a few.  There are so many.  And it is suspected that Marilyn Monroe also had Endo.  See?  You know someone who has it.  Might as well learn the signs and symptoms…

Susan Sarandon speaks out about Endometriosis at the Endometriosis Foundation of America’s Blossom Ball, an annual fundraiser

And Whoopi spoke at another EFA Blossom Ball event

I appreciate these women so very much for taking the time out of their busy schedules and speaking out about this disease.