Hello! My name is Emy and I am twenty-six years old. When I was nine I noticed a small lesion, the size and shape of a coin in the temporal side of my skull. As time went by I began losing the hair in the area. I thought I was going bald, so I decided not to push it further, nor ask my parents.
At twenty, I noticed yet another lesion, this time a deep gash in the right coronal area of the skull. I then became very afraid of going completely bald, so I decided to go to the dermatologist. The diagnosis was localized scleroderma, with a prescription for particular pain that by then had become more frequent. I later stopped the medication since the pain was gone, and I did not go back for medical check-ups.
Nowadays, the lesions are compacted and I have constant headaches. For as long as I can remember I have always felt exhausted and I do not know what to do to feel better. I have decided to go back to the doctors, but I would like to know whether they can really help me calm the symptoms for the scleroderma that I suffer from or whether going to the doctor will only help me become conscious of an illness that I swore I would forget.
What is the average of local scleroderma cases that progress on to something serious? Can I lead a relaxed life, forgetting about scleroderma without having to always worry about symptoms? Perhaps what I think is a bit crazy, but I talk from the experience I have had with this illness, am I supposed to live every day thinking about it? Is the probability of worsening high?
I am sorry I am perhaps only speaking about my own case, and I am leaving aside the cases of people that cannot forget that they have this illness, but I want to avoid obsessing about it and just keep it at a distance. I want to feel healthy and full of life, but I know that I can share some of the fears and symptoms.
We know there is no cure, and I am very aware that even if I want to forget about scleroderma, it is still there. What I would like to know is how damaging for my health it would be if I just tried to ignore the illness.
Email: [email protected]
Story edited 02-19-2010 JTD
Story posted 04-30-2010 SLE
Story Artist: Shelley Ensz
Story Translator: Alba León
Story Editor: Judith Thompson Devlin
Emy: Esclerodermia Localizada
Acerca de la Esclerodermia
Juvenile Scleroderma Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums *Online Support Group!*
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
ISN Translator and Editor: Alba León
Alba León is the ISN Translator for this page. She is studying international relations in Mexico City.
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.