SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Tata P: Diffuse Scleroderma


Lavender Pelargonium by Sherrill Knaggs, ISN Artist 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.

To Contact the Author

Tata P.
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
Alopecia Stories
Calcinosis Stories
Coping with Scleroderma
Diffuse Scleroderma
Diffuse Scleroderma Stories
Digital Ulcers
Digital Ulcer Stories
Eye Involvement
Eye Involvement Stories
Gastrointestinal Involvement
Heartburn Stories
Pulmonary (Lung) Involvement
Pulmonary (Lung) Stories
Sclerodactyly Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums *Online Support Group!*
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Translator and Editor: Alba León

Alba LeonAlba León is the ISN Translator for this page. She is studying international relations in Mexico City.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Tatita: Morphea

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)