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Juanita: Lupus
I have a wonderful life ahead of me.

For Juanita by Shelley EnszHello, my name is Juanita. I am thirty years old and I was diagnosed with lupus nine years ago. At that time I felt I knew more than the doctors. They said I needed medication and I disagreed. I believed I was healthy and nothing was going to bring me down.

Over the years I've felt so worn down and my body ached. For the last couple of months, my primary care physician has been doing a lot of blood work. She recently referred me to a rheumatologist because she said my blood work doesn't look good. She said I have an autoimmune disease, and that my healthy cells are attacking themselves. Again, I wanted to believe everything is fine. But then tonight, I remembered my aunt passed away two years ago from scleroderma. So I decided to go online to read about it and here I am scared. Scared to death, with tears rolling down my face. The symptoms listed are symptoms that I'm having. I'm so frightened of my appointment next week.

I'm only thirty. I just got engaged. I have a wonderful life ahead of me.

I haven't talked to anyone so I feel kind of foolish posting this, but right now at 4 AM in the morning, I needed to get my thoughts out. Thanks to those of you who will read this.

~ Webmaster's Note ~

Juanita, you didn't submit your email address so we are unable to write to you. We know how frightening it can be to first learn about scleroderma. There are over 100 autoimmune diseases, and they share dozens of similar symptoms, which often makes them very difficult to diagnose. It is possible to have many symptoms of scleroderma without having the illness. Also, scleroderma is not necessarily a death sentence, since there are many different types of scleroderma and degrees of severity.

I hope you have some answers from your doctor, and that you will read this and let us know how you are doing.

To Contact the Author
Juanita
(Email Address Not Given)
Story submitted 6-12-02
Story posted 6-21-02
Story restored from archives on
12-11-03. SLE

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
LINKS
Difficult Diagnosis
Lupus
Scleroderma
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
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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Go to Judith F: CREST Scleroderma
 
SCLERO.ORG is brought to you by the nonprofit International Scleroderma Network (ISN). The ISN is a full-service nonprofit scleroderma charitable foundation providing stellar research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.
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