SCLERO.ORG
Search
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

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
LINKS
Calcinosis
CREST Scleroderma
Difficult Diagnosis
Diffuse Scleroderma
Raynaud's
Types of Scleroderma
Go to Shar: Lupus, Scleroderma, Sjögren's, and Fibromyalgia
 
Most Recent Donors

Winn Schillberg
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!

In Loving Memory

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.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

 
The most important thing in the world to know about scleroderma is sclero.org!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.