Hello, I am thirty-two years old, and I have been suffering from this illness since I was nine. I am from Málaga and would like to help all those people who are having trouble fighting this illness. When I started having the first symptoms, we didn't know what it was. My fingertips lost their colour, they first turned white and deep purple afterwards. I was a little girl that stood out, I had long blond hair, and I have always been a bit chubby, when I was born I weighed 4 kilos, and I was raised, as my mother says, like a rose. I am the second of 5 children.
My mother noticed that I was tired and sad. She took me to the doctor and he said I was allergic to dust and chalk at school. After a few months, my skin started hardening and it looked strained. My face was changing, my lips started disappearing, my mouth became smaller, and the strain in my face changed my appearance. Then I went back to the doctor, this time it was a private one, and he told her to take me to the hospital. There, the doctors saw me and told my mother that I had to stay to see what was wrong with me.
After a month there, in which every day I got groups of doctors coming to see me, as if I was some strange animal, and I got tested for many things, among which they performed a biopsy. With it they diagnosed Diffuse Scleroderma. Some doctor told my mother that I wouldn't make it, but you can clearly see they were wrong.
I have lived with this illness for almost twenty-two years. I have gone through every cycle. My lungs are affected, my hands are deformed, I am 34 kilos, I have ulcers in my eyes because of the dryness, I have reduced mobility, since I have calcinosis throughout, as well as alopecia, stomach problems, reflux, in a nutshell, everything that this illness gives you.
But I can also tell you I am very happy. I have my downs, like everyone else, but I try to stay positive, and I haven't let the thought of what is still to come to affect me. I know my life is different, but I accept it and I will fight, come what may.
What I would like is to be with my family as long as possible, my brothers, my mother, who is like part of me, and my friends, who look up to me. That's why I say, let's keep going, let's look back and realize that life isn't easy for anyone. To whomever has been diagnosed with this illness, be strong and live every day to the fullest, you can live happy, and be very positive. As they say, faith moves mountains. Kisses to everyone, and keep on fighting.
Email: [email protected]
Story edited 09-02-07 JTD
Story posted 10-11-07 SLE
ISN Senior Artist: Sherrill Knaggs
Story Translator: Alba León
Story Editor: Judith Thompson Devlin
Tata P: Esclerodermia Difusa
Coping with Scleroderma
Diffuse Scleroderma Stories
Digital Ulcer Stories
Eye Involvement Stories
Pulmonary (Lung) Involvement
Pulmonary (Lung) Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums *Online Support Group!*
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
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.