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Nancy Hanna Rogowski

(1957 ~ 1995)

“In Loving Tribute & Remembrance of the Matriarch of the EDS Community”

        Founder of the Ehlers-Danlos National Foundation (EDNF)


Nancy dedicated this poem to her family whom she loved dearly. 

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           ♥ OUR LOVE LIVES ON ♥

        I Am With You Always!

To  those I love & those who love me

When I am gone, release me, let me go. I have so many things to see and do. You mustn’t tie yourself to me with tears. Be happy that we had so many years.

I gave you my love, you can only guess how much you gave me in happiness. I thank you for the love you each have shown, but now it’s time I traveled on alone.

So grieve awhile for me if grieve you must. Then let your grief be comforted by trust. It’s only for awhile that we must part, so bless the memories within your heart.

I won’t be far away, for life goes on. So if you need me, call and I will come. Though you can’t see or touch me. I’ll be near. And if you listen with your heart, you’ll hear all of my love around you soft and clear. And then, when you must come this way alone I’ll greet you with a smile and a “welcome  home.”

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“At times like this our humanness is tested by the pain and sorrow of life’s circle. May you take comfort in knowing that Nancy dies as she lived: with dignity and strength. She was a woman with great tenacity and who put her dream into action. She fought the good fight and was an inspiration to all. The foundation will be her legacy. EDS which is so confusing and has brought many trails to our lives, brought us the gift of friendship.” ~ Nancy L. Regas ~


A few words about a wonderful person. Nancy was generous and loving to her family. Her many talents included a beautiful singing voice and the ability to play the piano and organ by ear. She was an accomplished writer and excellent secretary.

It was Nancy’s smile that gave away the constant pain. Most women with Nancy’s capabilities and dynamic personality would have been a successful career woman with a bright future, including marriage and a family. Instead, Nancy’s life was a daily battle with pain caused by Ehlers-Danlos Syndrome (EDS).

Nancy’s disease went undiagnosed for the first 25 years of her life. She was unable to walk until she was 2 1/2 years old. Her youth was spent in and out of hospitals. She suffered dislocation shoulders, knees, wrists, broken fingers and fractured ribs. In all Nancy underwent 38 operations and lived with a constant debilitating pain that would have been more than most of us could endure. But endure she did and with a smile.

Before Nancy knew about her disease, hospitals thought she was a hypochondriac or a careless person. Not content to accept these explanations she hobbled to the University of Michigan with both of her knees in casts and two broken ribs. After days of research, she along with her Mom and Dad came away with a diagnosis for her disease, Ehlers-Danlos.

The turning point in her life came when she was 25 years old, after she lost her job because of numerous hospitalizations. That is when she decided to seek out others with the same affliction. During the first few months she was able to locate 12 other people with Ehlers-Danlos who were in need of support and information. From this first effort, Nancy decided to create a foundation whose purpose was to provide information and support to Ehlers-Danlos victims…she called it the Ehlers-Danlos National Foundation (EDNF).

In 1986, Nancy met and later married Jerry Rogowski a remarkable man who loved Nancy and shared her pain.For the last 8 years of her life, Jerry worked long hours on the Foundation after he did his regular job. He taught himself how to use the computer, word processor and desk top publishing. First he served as editor, then as President, as Nancy’s condition worsened. Together they willed the Foundation to success. Starting from scratch in her parents basement, two people who gave their love and support to the Foundation. The Foundation had grown to over 2000 members and has a distinguished Board of over 30 Medical Professionals. Along the way Nancy appeared on radio and TV and was featured in the Detroit News and Readers Digest for her efforts. She touched many lives sharing their pain, and providing comfort and support to others despite her own debilitating and all encompassing pain. The files of the Ehlers-Danlos National Foundation are filled with letters to Nancy. They have come from all 50 states, Germany, Norway, and Australia. Their themes are all the same…thanks for being there, for being you and thanks for making our loves more bearable.

Our hope is the the Ehlers-Danlos National Foundation (EDNF) will continue on to enlighten the Medical Professional and affect a cure. Nancy has already made it possible for research to be started.

Nancy died at 12:50 pm on Friday, June 30th, shortly after arriving at the office. She was 38 years old, she leaves behind a loving husband, family and friends too numerous to count.  She was one of a few people who overcame tremendous personal suffering to help others and she left the world a better place than she found it.                                                WE LOVE YOU NANCY!                                                                                              ~Written by her family~

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All these years, Nancy still continues to make a difference for ALL those with

Ehlers-Danlos Syndrome (EDS).

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She had the tremendous gift of being able to comfort and inform without talking down to anyone. Each person found in her a caring and gentle soul who listened and shared the knowledge she had so painfully come by.  Nancy was always in pain, sometimes excruciating, but to speak with her you would never know it; she never let on. The most important thing was how to help the EDS family. She was always looking for new literature, new doctors, new ways of reaching out to our members.” ~ Claire Forst ~


Excerpts used: Permission granted by Jerry Rogowski to use and/or reprint the information in EDNF’s Loose Connections (1995 Volume 10, #2) Memorial Tribute to Nancy Hanna Rogowski, for the sole purpose of continuing to honor Nancy’s accomplishments and memory within the EDS Community.