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Serena: Diffuse Scleroderma

I was a strange bird right from the start!

Bird for Serena by Shelley Ensz I am a forty-one-year-old female. I was born breach and was a ten month baby, so I always thought I was a strange bird right from the start!

The first signs of scleroderma really did not become apparent, however, until I was eighteen or nineteen years old with the onset of Raynaud's. I called it poor circulation!

When I was about twenty-six years old I developed lumps on my right forearm, I ignored them, hoping they would just go away. After a number of years I realized that they would get worse in times of stress. By the time I was twenty-eight they covered both forearms and also seemed to drain a white chalky substance.

Also by now I had numerous infections on finger tips, still never being diagnosed of anything, just treated with antibiotics each time. When I was also twenty-eight, my left thumb became infected (strep) and I was hospitalized for orthopedic surgery. A couple of years later both elbows became infected and more antibiotics were administered. I started calling them my stress elbows. I started administering and treating the now all-too-familiar infections myself.

Finally when one arm was infected I went to a doctor again and asked what to do about the forearms and was told it was a fungus, and asked if I worked in soil or fertilizer. I was given a type of iodine to drink. The lumps never went away and the iodine gave me gas.

A few years later I had a biopsy and it was confirmed that the lumps were in fact calcium. The doctor told me that it was one of many relatives of a type of arthritis. He suggested an incision down both forearms and scrape the bone. I asked what the chances of them returning was and he pooh-poohed the notion. Said it was nothing to worry about. Due to my experience with infections, I decided I was not a good candidate to have incisions made on any part of my body and did not go back.

I lived through a great number of years fighting infections in both forearms and fingers.(not aware of atrophic ulcers). It was not until I was thirty-nine that I was diagnosed with CREST. I entertain antibiotics for infections on forearms now and have learned what conditions have to be present to set off Raynaud's attacks.

I have managed to save both index fingers (with the exception of the tips) without the use of calcium channel blockers.

I lived with CREST before being diagnosed, however the ignorance was not bliss! I have made adjustments in my life and career. A different way of life all together. Everyday something changes and I make more and more adjustments, to be comfortable and happy.

Scleroderma is not the end. It is however acceptance and knowledge, that even the strangest of birds have a place in this world — and that I am among some of the best!

To Contact the Author

Serena D.
New email address needed 09-14-06 SLE
Old Email Prefix: SERENANOSE
Posted 12-16-98
Story edited 9-1-03 SLE

Story Artist: Shelley Ensz
CREST Scleroderma
Difficult Diagnosis
Diffuse Scleroderma
Types of Scleroderma
Go to Shar: Lupus, Scleroderma, Sjögren's, and Fibromyalgia

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.

International Scleroderma Network (ISN)