[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

Alana: Scleroderma


Coffee Cups by Shelley EnszAbout two years ago I went to a rheumatologist because I had some problems in my legs and hands. My legs would become really tense and my hands would turn purple without apparent reason. When I went to the doctor, he sent me to get a series of analysis to rule out lupus or other similar illnesses.

My great mistake was not taking these tests seriously. I got them done, but I didn't go back to the doctor since I was already feeling better and the pain and swelling had almost disappeared.

Yesterday, after two years I went back to the doctor, I told him I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite. He ordered a new set of analysis, but this time it is only to see how advanced my scleroderma is.

I am not scared by the illness in itself, however I am worried because the medicine for this illness in my country, Perú, are, unfortunately, only given to those people with insurance from the Peruvian state. I can no longer sign up for this health care system as the registry is completely closed, and so I cannot have the adequate treatment for my illness since, as I repeat, this medicine is only given to the Peruvian health care system and it is not sold in any pharmacy in my country.

To Contact the Author

Email: tatiana_espinozarosas18@hotmail.com
Story edited 04-25-08 JTD
Story posted 11-14-08 SLE

Story Artist: Shelley Ensz
Story Translator: Alba León
Story Editor: Judith Thompson Devlin
Alana: Paciente Nuevo con Esclerodermia
Microstomia (Small Mouth)
Lung (Pulmonary) Involvement
Lung (Pulmonary) Stories
Skin Fibrosis
Skin Fibrosis Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?

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

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!

New Personal Stories

We are revising our personal story submission program. If you would like to post or update an existing story on our site, please email isn@sclero.org.
Sheri M: CREST Syndrome (Update) It has been three years since I've posted and I am happy to say I am still doing well...
Go to Alegria: Fibromyalgia (Israel)

SCLERO.ORG is operated by the International Scleroderma Network, which is a full-service U.S. nonprofit 501(c)(3) established in 2002. We provide stellar worldwide research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. Donate or Shop Now.

Questions? Post a message in Sclero Forums or email us directly at isn@sclero.org. Or call our Scleroderma Hotline (English only), Toll Free in U.S. 1-800-564-7099 or Direct at 1-952-831-3091. Ask for our Welcoming Email.

Our headquarters postal mailing address is: International Scleroderma Network (ISN), 7455 France Ave So #266, Edina, MN 55435-4702, United States.

The most important thing in the world to know about scleroderma...is sclero.org!
Home   Medical  News  Sclero Forums  Support  Translations  Donate or Shop
Copyright 1998-2015, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.