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A.M. Keyes: Surviving Daughter of Pulmonary Fibrosis/Scleroderma Patient

"Be strong, and hold on to your faith."

Starburst by Shelley Ensz My father died on February 9, 2002, from pulmonary fibrosis, a complication of the disease scleroderma.

My father was diagnosed with scleroderma twenty-two years ago. I remember well the day the doctor informed my father, mother, and me of his findings. He told us that there was no cure. A knot formed in my stomach. It was the same knot that came back on February 9, while listening to the doctor outside of my dad's hospital room tell me that we were going to lose him.

My father held on to see all of his children and grandchildren before falling into a peaceful and eternal sleep. It was a most spiritual and heartfelt transition, although we are left with a deep void. It happened so fast, once it started, that now as I look back on it, I don't know if there was anything that could have saved him. I want to believe that the doctors did all they could.

Still, I miss him terribly and have decided that I want to become involved in making others aware of this disease. I was amazed that people knew very little about scleroderma and the many forms it can take.

In memory of my dad, I would like to change that.

For all of you who have loved ones out there with the disease, hold them close and relish each and every day. I know I did and when my daddy lost his battle, I know that we gave it our all.

I believe that, in time, a cure will be found, and knowing the type of man my father was, he would want that, in spite of the fact that it could not save him.

To all of you, be strong and hold onto your faith.

To Contact the Author

A.M. Keyes
Email: [email protected]
Story posted 2-21-02
Story edited VH1: JTD 8-20-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
LINKS
ISN Scleroderma Awareness
Pulmonary Fibrosis
Scleroderma
Survivor Stories

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Amy: Daughter of Systemic Sclerosis Patient: What is Scleroderma?
 
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In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.

 

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