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Lisa C: Limited Scleroderma

I sometimes think that being sick and not always appearing to be sick makes it difficult.

Red Bottlebrush Flowers for Lisa by Sherrill Knaggs, ISN Artist I was diagnosed with some sort of autoimmune disease about twelve years ago. It was not clear at that time which form I did indeed have, but lupus was suspected. I had swollen lymph nodes and Raynaud's. Overall I did not feel bad. I was twenty six years old.

Since that time, it has been a slow progress and I have felt very blessed. Within the past year though, everything has seemed to surface. I go to Thomas Jefferson University Hospital in Philadelphia. My doctor there is wonderful. Having a doctor listen to me is essential. I have found that it is difficult to find a doctor who listens to me and who treats me as an individual rather than a subject.

I suffer from small airway disease, Raynaud's, severe heartburn, high blood pressure, inability to eat without moving my bowels, costochondritis, phlebitis, and joint pain. I am in therapy for my upper extremities. I cannot sleep at night. My skin is flawless and not showing any signs of hardening. I am close to forty and have the appearance of a twenty-something. I think that's cool!

I am currently on many medications, including anti-inflammatories, muscle relaxers, antacids, blood pressure pills, lung medication, iron supplements, pain medications, and sleeping pills. I recently finished a round of steroids for inflammation in my rib cage and breastbone.

I do not look sick, so I can fool people easily. My antinuclear antibody (ANA) titer is 1380. My mother has rheumatoid arthritis (RA) and my thirteen-year-old daughter has what is believed to be early lupus.

I sometimes think that being sick and not always appearing to be sick makes it difficult. People in general do not understand this little-known disease, and keeping it bottled up inside is painful in itself. It would help if the world had a better understanding of scleroderma. Is there anyone out there like me?

To Contact the Author

New email address needed 09-14-06 SLE
Old Email Prefix: lmaggirl
Story posted 4-30-03

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Antinuclear Antibodies(ANA)
Bowel Involvement
Difficult Diagnosis
High Blood Pressure
Joint Pain
Limited Scleroderma
Rheumatoid Arthritis (RA)

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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!

Go to Lisa D: Morphea Scleroderma
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