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.
(Email Address Not Given)
Story submitted 6-12-02
Story posted 6-21-02
Story restored from archives on
Story Artist: Shelley Ensz
Story Editor: Judith Devlin
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.