Scleroderma is a chronic autoimmune rheumatic disease in which the body attacks its own connective tissue.  We’ve explored scleroderma in general and learned that it can cause much more damage than “hard skin.”  It can cause damage to the lungs, heart, kidneys, esophagus, and gastrointestinal tract in patients who live with the disease.

My mom, who lives with scleroderma and lupus, has agreed to share her story with us today.  I’m very glad that she’s willing to give one patient’s view on the disease and the effects it can have on the body and one’s future.

Please tell us about your diagnosis.  When were you diagnosed with lupus?  What were your early symptoms?

I noticed strange symptoms in fall 1987 after a serious bout with Rocky Mountain Spotted Fever.  I began having unusual health issues in that with each illness something was left “broken.”  First, my inner ear malfunctioned after the flu; then my pancreas quit regulating my insulin levels properly; and by 1994 I was having difficulty breathing during a trip to Colorado.  Finally, I was diagnosed with systemic lupus in early 1995. 

I was very lucky because Oklahoma held a lupus symposium twice yearly to educate lupus patients.  It was perfect timing.  At the spring symposium, the main speaker explained exactly what was going on with lupus.  He said that when you’re young your thymus gland helps the body learn to recognize what is your body and what is not so that your immune system works against “invaders.”  Somewhere along the road the body loses its ability to differentiate itself from virus, bacteria, etc. so that when one becomes ill, the body’s immune system is just as likely to attack itself causing damage. I thought, “what a simple explanation.”

How were you diagnosed with scleroderma?

I was under the care of a rheumatologist for years when my doctor diagnosed CREST syndrome.  The name CREST was used to identify symptoms: Calcinosis in soft tissue, Raynaud’s syndrome, Esophogeal dismotility, Sclerodactyly, and Telangectasias.  I was never told that CREST was associated with scleroderma because I only had the first two symptoms as part of the syndrome.  I thought it was just another feature of the lupus.  The first time I heard scleroderma as a diagnosis was during a doctor’s visit when my rheumatologist referred me to a scleroderma specialist.  At that time, I really didn’t know what scleroderma symptoms were.

Last week we learned that there are many different types of scleroderma and that the designation CREST syndrome is no longer used.  What form of the disease do you have?

I have limited cutaneous systemic sclerosis, a name which is not nearly as understandable as the acronym of CREST.  Limited cutaneous systemic sclerosis is also sometimes referred to as Mixed Connective Tissue Disease.  I am still learning about the disease and its different names.