(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

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

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

ISN Artist: Sherrill Knaggs (In Loving Memory)

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

ISN Story Editor: Judith Thompson Devlin

Judith 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!

TOLL FREE HOTLINE, U.S. and Canada: 1-800-564-7099
Ask for our Free Info Packet by email or postal mail!

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:

The most important thing in the world to know about scleroderma is sclero.org!