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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
Danene
Email: spoiledbrat93277@yahoo.com
Story edited 08-02-06 JTD
Story posted 08-23-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
LINKS
Caregiver Stories
Coping with Scleroderma
CREST Scleroderma
Scleroderma Experts
Types of Scleroderma
What is Scleroderma?
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs Sherrill 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
Judith Rose ThompsonJudith 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 !
New Personal Stories
Mila: Morphea Now I am twenty-five years old, and that spot has grown throughout my right leg and on one side of my belly button...
(Español/Spanish) Mila: Morfea Hoy en día tengo 25 años y esa mancha está en toda mi pierna derecha y al lado de mi ombligo...
(Español/Spanish) (Update) Jeins: Esclerodermia Sistemica Difusa y Dermatopolimiositis Ya había escrito mi historia hace 3 años cuando recién estaba pasando por la enfermedad. Para quienes no lo saben tengo esclerodermia y dermatomiositis desde los 19 años.
Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
More New Stories: November 2008
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