Recognising endometriosis advocates: Ellen Johnson

October is Breast Cancer Awareness Month, so it seems only fitting that we honour the memory of our very own Ellen Johnson, who died six years ago of metastatic breast cancer.

Picture of Ellen Johnson

Ellen T Johnson

Ellen touched the lives of countless women and girls with endometriosis, and left us all with our own memories of an extraordinary woman: a mentor, leader, friend, and a source of optimistic inspiration to so many throughout our global community.

While we still deeply feel her loss, we are eternally grateful for her legacy. Through her passionate, selfless efforts, Ellen helped change the face of this disease for so many who would have otherwise suffered in silence.

Getting involved in endometriosis

Ellen was a vibrant, outspoken advocate of endometriosis and women’s health issues.

She suffered greatly with the disease, and was one of those women with endometriosis who was never able to have children, despite trying for and wanting a child badly.

In 1996, she formed the Endometriosis Association Houston Support Group and served as its volunteer leader for five years.

Since its inception in the mid-90s, and until her untimely death, Ellen was a key contributor to one of the first online forums, Witsendo, where women with endometriosis met and shared their experiences and provided support to each other.

Making a difference for women with endometriosis

Ellen’s tireless advocacy was via her soothing and supporting written voice. She was a woman whose pen crafted articles enabling those with endometriosis to take charge of their health and encouraged them to cope with their disease – just as she did with hers.

Ellen Johnson with her magic pen

When she saw a need, she filled it by writing. When Ellen had to endure a “bowel prep” the night before her first endometriosis surgery without a clue or a single baby wipe, she knew she had to give other women tips for getting through it more easily.

Ellen’s theory about getting through health challenges:

put one foot in front of the other, take it one day at a time, choose hope above all other alternatives, and pray.

Ellen’s major achievements in moving the field of endometriosis forward

  • Establishing the largest endometriosis support group in the USA (the Houston chapter of the Endometriosis Association);
  • Editing the online newsletter (The Coping Zone) for endometriosis patients and practiotioners – an internet breakthrough in online support;
  • Working tirelessly with leading endometriosis and reproductive specialists to write numerous articles on varied subjects ranging from endometriosis to thrombophilia and recurrent pregnancy loss to blastocyst transfer and determination of ovarian reserve;
  • Developing the content for FirstVisitIVF.com, a comprehensive tutorial for infertility patients;
  • Authoring many articles including those published in the books Unveiling Endometriosis and Living Well with Endometriosis;
  • Contributing editor to Endometriosis.org where she allowed this website to publish everything she had ever written to support women with endometriosis.

Until her untimely death, Ellen continued to provide Endometriosis.org with articles on almost every single aspect of “coping with endometriosis“ – articles still helping countless users of this site every day.

Her writing is her legacy.

Where is Ellen Johnson now?

Ellen died on 11 November 2007 from metastatic breast cancer.

She had formed her own writing company and won numerous awards for her scripts and articles. When she wasn’t writing for clients, Ellen wrote simply for the joy of writing and communicating ideas. She was active in her community, donating her writing and production services to such charitable organisations as the ESCAPE Center, St Paul’s United Methodist Church, and the Emergency Aid Coalition.

Ellen was a great friend and a great collaborator, and we will never forget her. To learn more about this remarkable woman, click here.

See also

Coping with endometriosis
How to survive a bowel preparation
→ What to tell others about endometriosis
→ Painful intercourse
→ Endometriosis and cancer

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