[Skip to Content]
Patient & Caregiver Stories Main Menu
(English) Stories 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
Stories in Other Languages: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010

Carlos S: Son of Father with Diffuse Systemic Sclerosis (Diffuse Scleroderma)


Medications by Sherrill Knaggs, ISN Artist Hello, my name is Carlos. I am Brazilian, but right now I live in Bolivia, where I study medicine. My father was diagnosed with diffuse systemic scleroderma about eight months ago. At first everything was really complicated, the symptoms had doctors puzzled and he had to go from doctor to doctor searching for answers while I, in another country, suffered because I could not be by his side.

My father is a simple man, he works the land, and does not have a great degree of schooling, but if there is something he has been taught is to never give up. When I went back to my country on vacations, I could finally be with him and we finally got to a correct diagnosis. I was really taken aback by the news, even if I am in direct and everyday touch with this type of situation. He was a bit altered, but his strength and pride would never let him stop fighting. He always said he would fight for his health and his life.

Now he is getting treatment. He must travel to the capital of our department in Brazil every month, to get the medicine. We always speak with him and every day he shows more happiness and strength. He is fighting all the adversities that are coming his way. This leaves me so relieved, knowing that he will not give up, that he will continue fighting until better days come along!

This experience has done something good, it has brought us closer, it has bonded us as father and son, but also as friends. And as a health care professional, it has opened my eyes to this illness which is rare and oftentimes left aside; I am creating a Help Group to patients with Systemic Sclerodermia in the Bolivian city where I live, so I can give them the same hope and good expectations that my father has given me. Thank you, and to all of you, strength, courage, everything will be fine!

To Contact the Author

Carlos S.
Email: roudinei_santana@pop.com.br
Story edited 09-02-07 JTD
Story posted 09-14-07 SLE

ISN Senior Artist: Sherrill Knaggs
Story Translator: Alba León
Story Editor: Judith Thompson Devlin
Carlos S: Hijo- Sistémica Difusa
Caregiver Stories
Diffuse Scleroderma
Diffuse Scleroderma Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums
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 Leon, ISN TranslatorAlba León is the ISN Translator for this page. She is studying international relations in Mexico City.

ISN Story Editor: Judith Thompson Devlin

Judith Rose ThompsonJudith 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!

New Personal Stories

Kristi U: Systemic Scleroderma We sold our motel business because it hurt me so bad to work each and every day...
Chris D: Systemic Scleroderma About eighteen months ago my entire body began going haywire...
Iko H: Limited Systemic Sclerosis (Belgium) I am fifty-one years old and in May 2011 my diagnosis of scleroderma was confirmed. I am studying for horse veterinarian and am in my last year...
More New Stories
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
Go to Carmen: Linear Morphea, En Coup de Sabre
About the ISN

This website is certified by Health On the Net Foundation. Click to verify.We are a full-service nonprofit 501(c)(3) providing stellar worldwide research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. This site complies with the HONcode standard for trustworthy health information: verify here.


Scleroderma Hotline (English Only)
Toll Free U.S. Call 1-800-564-7099
Direct Line: Call U.S. 952-831-3091

Post a message in Sclero Forums
Email: isn@sclero.org

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
United States

AKA Scleroderma from A to Z and SCLERO.ORG
Privacy Policy, Financial Disclosure, and Disclaimer.

Home   Medical   News   Sclero Forums   Support   Translations

© Copyright 1998-2014 International Scleroderma Network
All Rights Reserved