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Alana: Scleroderma

Peru

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
Alana
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
LINKS
Español/Spanish:
Alana: Paciente Nuevo con Esclerodermia
English:
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 Scleroderma
Types of Scleroderma
What is Scleroderma?
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
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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