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Juanita: Lupus

I have a wonderful life ahead of me.

Hello, 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

ISN Story Editor: Judith Thompson Devlin

Judith 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!

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.