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Danene: Daughter of CREST Scleroderma Patient

I feel if she had been referred to other doctors who know more, we would not be were we are now!

White Camelias on Cherise by Sherrill Knaggs, ISN Artist My story is to let people know that when you know someone who is diagnosed with this disease it can be extremely hard. Especially knowing that your loved one may eventually die from this disease. Let me start out by saying that my heart goes out to everyone in this spot.

My mother was diagnosed with CREST three years ago. She has given up any hope for a cure or any other treatments for her disease besides pain medicine.

I feel if she had been referred to other doctors who know more we would not be were we are now! I am sure her disease is painful, but if I was told to hang from my toes for three days it might work, I would do it. My mom used to be so happy, full of life, and now she has turned into someone I do not even know. All she wants and needs are her pain medicines. I am afraid that we will lose her to her addiction.

I guess I am writing to let people know to not give up hope. Stay on top of all medical breakthroughs. May god be with you all…you are in my prayers.

To Contact the Author

New email address needed 08-06-09 SLE
Old Email Prefix: spoiledbrat93277
Story edited 08-02-06 JTD
Story posted 08-23-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
Caregiver Stories
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CREST Scleroderma
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Types of Scleroderma
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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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 Dani: Chronic Adult-Onset Asthma

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)