Ellen T Johnson 1957 – 2007

By lone hummelshoj | 11 november 2007

Ellen died today. Remembrance Sunday. How befitting for a woman no one in the endometriosis community will ever forget.

Ellen was an advocate for women with endometriosis, a soothing and supporting voice, and a woman whose pen crafted articles which enabled women with endometriosis to take charge of their health and encouraged them to cope with their diease – just as she did with hers.

Picture of Ellen Johnson
Ellen T Johnson

I first met Ellen 12 years ago. We shared a disease – endometriosis – and we shared a vision to empower women with endometriosis through information and knowledge to enable them to make informed choices about their treatments. We used the Internet to fullfill this mission, and have worked together at EndoZone.org and at Endometriosis.org to reach hundreds and thousands of women with endometriosis across the globe.

The thing about Ellen was that when she saw a need, she filled it by writing. When she 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! She has continued to provide this website with articles on almost every single aspect of “coping with endometriosis“. A former support group leader, Ellen’s theory about getting through health challenges was: put one foot in front of the other, take it one day at a time, choose hope above all other alternatives, and pray.

In a statement released by her family, Ellen is described as a woman who

“loved life, God, her husband David LeRoy Johnson, her devoted family, her incredible friends, the great State of Texas, buckwheat pancakes with real maple syrup, warm socks, being a girly girl, experimental cooking, good movies, and a well-written sentence. Throughout her journey with cancer, her faith rarely wavered. She remained steadfast in the belief that while this was not the path she would have chosen, it was certainly the path she was intended to travel.”

The Endometriosis Research Center (ERC) has announced the establishment of a Memorial Fund designed to honor and celebrate the life of Ellen.

The Ellen T Johnson Memorial Fund is intended to help off-set some of the costs of surgery and expenses for women and girls seeking endometriosis treatment.

Women and girls with endometriosis often find it necessary to seek care outside their local health system for effective treatment, and those specialising in the treatment of endometriosis are limited in number. Obtaining such treatment often incurs cross-country travel and significant costs not covered by a patient’s insurance. The ERC wishes to honour Ellen’s memory by continuing to help others get the care they need in her name.

The Ellen T Johnson Memorial Fund will be supported through tax-deductible donations to the ERC in Ellen’s name. The funds will be disbursed on a case by case basis as permitted to disadvantaged patients in need of effective endometriosis treatment. The foundation has also already received a service commitment to the Memorial Fund from one of the world’s leading endometriosis treatment centres, and is seeking additional support from the healthcare community to offer similar services in conjunction with the fund.

This is a befitting memorial to Ellen. I know she would have wished this, because she championed the best care for those with endometriosis.

Ellen was a great friend and a great collaborator. I will never forget her. Remembrance Sunday will for me always be for Ellen.


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