At age ten, I developed a rash on my leg that never went away and would not respond to any treatment. Subsequently, I was diagnosed at age fifteen with morphea scleroderma.
I knew nothing about the disease and went on with my life thinking I had a skin disease. I have the neck ring, and everyone thought I had a dirty neck. I also have the discoloration on my forearms and across my lower back.
Since my initial diagnosis, I have had four pregnancies. One was a miscarriage and my last two were premature. I had four spontaneous pneumothorax (collapsed lung) in three months and severe migraines, two of which resulted in stroke-like symptoms.
I finally saw a rheumatologist about six years ago who told me I had Raynaud's phenomenon and telangiectasias (spider veins) on my hands. Blood work was ordered, but I was getting a divorce and as soon as the divorce was final, I lost my health insurance, so I never went back to the doctor.
These last few months, I have had asthma attacks or tightening in my chest, and heart palpitations. I freeze in air-conditioning, and I have just recently developed lesions on my torso. In just one week the lesions went from size two to twenty-three, with all but one of them being symmetrical. I have also been complaining of joint pain, but my blood work shows no arthritis. I am tired, but do not suffer from diabetes or hypothyroidism (which runs in my family). Since the lesions have appeared, my hips hurt constantly.
I am looking for someone else who may have the same symptoms, as this disease affects us all differently. I am finally going to a rheumatologist at the Cleveland Clinic where they say they have several scleroderma patients, so they are familiar with it. Different doctors have told me that because my test results come back normal, it must be in my head! I know, 'Been there, done that!'
I am now Chair of the Scleroderma Awareness Committee as well as the Graphic Designer for the International Scleroderma Network. I became involved in this as a result of a class project I did for scleroderma awareness while attending Virginia Marti College of Art and Design in Lakewood, Ohio. I earned my Associates Degree in Graphic Design in the spring of 2002.
I have morphea with possible CREST Scleroderma. I have a cousin with diffuse scleroderma, and my only sister has lupus. This is why scleroderma awareness is a high priority for me. I feel that the more people and doctors know about this rare and baffling disease, the closer we come to finding its causes and its cure.
We all need people who understand what we are going through. Thank you for the opportunity to share my story.
New email address needed 07-19-06 SLE
Old Email Prefix: dnmickey_99
Story posted 9-3-01
Story update posted 2-11-02
Story edited VH1: JTD 9-5-03
Story Editor V1: Judith Devlin
Pregnancy and Scleroderma
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!
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!
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.