I was diagnosed with morphea scleroderma the day of the September eleventh terrorist attacks. On my way home from the dermatologist's office I heard about the plane crashes on the radio. It was a bad day.
I was seventeen at the time and I had developed a lump under my skin just below my rib cage about a year before. When I first noticed the lump, I told my mother about it. I was worried that it was some kind of tumor. My parents wrote it off as a calcium deposit which they said would go away by itself. Well, it did not. It kept getting bigger and bigger. Finally I talked my parents into taking me to the doctor. We went to our family doctor, whom we have been going to since I was born. He felt the area with his hands and diagnosed me with a benign tumor and told me that if I felt any pain to come back.
I had stomachaches and cramps, and my skin was very itchy, so I went back to the doctor. He told me my diagnosis had not changed. I had many questions. None were answered. I wondered why I was not being given a biopsy or any other type of tests. So I demanded to see another doctor in the same office. I told this doctor what I was thinking and he agreed we should do some tests. He referred me to a good friend of his who also was a dermatologist.
I went to see the dermatologist on September 11, 2001, and I was diagnosed with morphea scleroderma. He prescribed a strong skin cream. It makes the affected skin softer but seems to make it more discolored. I hardly ever use it.
I have also noticed my tattoos seem to bump out a little bit as if scarred. But, I am not sure if the morphea effects it or not. Since I have been diagnosed, the morphea has spread across my stomach. I also have another patch on the opposite side of my stomach. I have not had a previous injury and I have not had a severe sunburn. I am just being normal and just being me like always. I am not worried about what I may look like or how my skin feels. I just do not think about it.
When people ask me "What happened?" or "How did you get burned right there?" I just tell them it is a scar from being shot or that I had an alien baby ripped out of my stomach. Anything to make it fun.
But, I did learn one valuable lesson. It is okay to get a second opinion if we do not trust our doctor's decisions. It is also good to ask questions if we are confused. It is our health, after all.
Email: withheld by request
Story posted 6-01-03
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
What is Scleroderma?
ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series .
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.