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Lorrie: Limited Scleroderma/CREST

At first I thought, "Oh my goodness! I am going to die." But my doctor assured me that I could very likely live to be an old woman.

For Lorrie by Shelley Ensz Hi, my name is Lorrie. I am twenty-six years old and was diagnosed with limited scleroderma/CREST in February 2002. My symptoms started around November of 1996. There were ulcerations on my fingertips, and I had severe heartburn. By the latter part of 1998, I had begun having severe stomach problems. I was always vomiting, and the heartburn was so bad that I could not sleep lying down.

In June 1999, when I began having problems swallowing, I decided it was time to see a doctor. But before I did, I found out I was pregnant. I had a normal pregnancy with no problems at all. My daughter was born in June 2000.

After her birth, I went to the doctor about my swallowing problem. I was told I had a stricture caused from acid reflux. In January of 2001, the stricture was dilated. In February, I began having the problem again. The doctors said it was normal and dilated the stricture a second time in July. I was put on medication for it, and I have had no problems since.

In August, I noticed red spots (telangiectasias) on my lips and hard spots on my elbows.

In October, I went to a dermatologist about the hard spots on my elbow. He removed them and two weeks later, he told me it was calcinosis and that it was rare, but nothing serious. Before the end of my appointment, I asked him to take a look at my fingers, which I was having problems with, again. He asked me a few questions and referred me to a rheumatologist. After all kinds of tests, I was diagnosed and started on medications.

I am twenty-six years old and feel like a pillhead. I am not sure what to think about all this. At first I thought, “Oh my goodness! I am going to die.” But my doctor assured me that I could very likely live to be an old woman. I am worried about my skin because I do not know what will happen. My fingers really hurt. My elbow still has not healed. I don't feel well at all.

On a good note, summer is almost here! Maybe with the sunlight my fingers will heal along with my elbow. I am hoping and praying for a cure.

Thanks for reading my story.

To Contact the Author

New email address needed 09-06-06 SLE
Old Email Prefix: LORRIE689
(New email address needed 7-22-03)
New email posted 3-23-04 SLE
Story posted 3-27-02
Story edited 7-22-03 SLE
Story edited VH1: JTD 8-12-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Difficult Diagnosis
Esophageal Stricture
Limited Scleroderma/CREST
Problems Swallowing
Pregnancy and Scleroderma
Red Spots (Telangiectasias)
Ulcerations (Finger)
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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!

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