I first found what turned out to be linear scleroderma at age seven, although I wasn't diagnosed until sixteen years later. Doctors just had a hard time diagnosing the tough patch of skin on my neck and lower back.
I went to Mayo Clinic three times as a child and teen with the only result being told, "at least this doesn't seem life threatening." Fortunately, my family doctor realized that the symptoms appeared to be those of an autoimmune disorder and he treated me successfully (in regards to pain) with medication and cortisone injections.
I actually was finally diagnosed with a localized form of scleroderma by the same dermatologist that I first saw sixteen years earlier!
Men who have this disease are at a genuine disadvantage as diagnosis is not as quick and the public is unaware that men can suffer from this condition. I wish there was a way to increase awareness.
I was told that this would go away as I became an adult. It hasn't. The areas on my neck and lower back have now connected into one massive lesion that covers by entire left back. I have had doctors, who instead of offering any hope for relief from pain, have instead said that pain medication is the only option, refusing to put me on methotrexate or other treatments that may slow the progress, and told me to "just be thankful you don't have the systemic form."
I have recently been diagnosed with Raynaud's as well, have had gastrointestinal difficulties more common to systemic forms, and have witnessed these lesions grow and deepen rather than decrease in size.
I say all of this not to complain but to proclaim these two points loud and clear: Men also have scleroderma and this disease follows no rules. Use the latter point to take charge of your health care so that this disease becomes something you live through instead of something that lives through you.
New email address needed.
Old Email Prefix: trimartisan
Story edited 05-24-07 JTD
Story posted 06-11-07 SLE
New email address needed 05-01-08 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
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.