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Danie: CREST Scleroderma
When I was young I was sick a lot.

DanieI would love to share my story of CREST scleroderma, which I have been living with for over six years now.

When I was young I was sick a lot. My mom brought me to see the doctor frequently. All he had to say was "growing pains" because I was young. I would feel sick mostly in the morning and after a few hours would feel better. My parents always thought of it as an excuse to miss school. It all started with my hands. They would be swollen and turn white and blue in cold weather.

As years went on I kept feeling worse and worse. Finally I went to see my doctor again for him to do more tests. It was in 1998 that I was diagnosed with CREST scleroderma. When my doctor gave me the news I told him thank you! He was amazed at my response. I then said, "Well, at least now I know I am not losing my mind."

My family understood as little about this illness as did I. All I understood at first that it was like arthritis. Little did I know it was much more serious than that.

I was able to finish school with no problems and went to college. I even worked tough jobs with no problems. As years went on I was amazed at how it progressed. I was diagnosed with Sjogren's syndrome a year after being diagnosed for CREST. The pain was unbearable at times. I would start to miss more and more work. Then I got diagnosed with fibromyalgia. At first I thought it was just a way for the doctor to tell me I had pain. I took it as an excuse and thought he did not know what else to tell me. Come to find out it is a very serious illness as well.

In November 2002, I stopped working. I figured if I wanted a halfway decent life that it would be the best thing for me. That was the hardest part. I am hoping one day that I will be able to return to work.

At the beginning of 2004 I was diagnosed with acid reflux.

I have a lot of support from my fiancé and also my family and friends. I do have better days than others, but the support I get from everyone around me helps me get through a lot. Their support helps me realize that I am not necessarily living with this illness alone.

To Contact the Author
Danie
Email: danie_leblanc@hotmail.com
Story posted 07-06-04 SLE

Story Photo: Danie
Story Editor: Judith Devlin
LINKS
Acid Reflux
CREST
Fibromyalgia
Scleroderma
Sjogren's
What is Scleroderma? Brochure
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
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...
Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me...
More New Stories: November 2008
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