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
All Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 ;2009
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish

Aurora: Linear Scleroderma

Cáceres, Spain

Orange Day Lily for Aurora by Sherrill Knaggs, ISN Artist It all began when I was five years old, in 1963. In my city of origin, pediatricians did not know what was happening to me, and when they saw how those white spots turned darker, and how some parts of my body were so dry and irritated, they sent me to Madrid.

After many problems and studies, the only thing my parents found out was that it was not contagious for my brothers, nor hereditary. I took vitamins every day, until I got tired of so many pills.

I grew up and learned how to live with my atrophies. I got married, and had four kids without knowing how serious this was, without even knowing I had an illness.

One day, after being sick for a time, my doctor found out I had a serious case anemia, and at the same time sent me to the dermatologist. He, in turn, sent me to the hospital Salamanca, where I was diagnosed with linear scleroderma, with a short term treatment, since the medication would not allow me to recover from my anemia.

I next began to trip and fall very easily. Doctors saw that I was affected to the point of suffering hemiparesis on my left side. I began to have spasms and was treated by a neurologist. By this time I considered anemia something quite normal in me.

I began to lose weight, until I was 37 kilograms (82 pounds), and after that they discovered I had hypothyroidism. During the tests they also discovered that my stomach was shaped like a cylinder.

In the meantime, my anemia was not getting any better, and neither was the pain, so they checked and discovered a tumor in my colon. I had an emergency operation and as soon as I was better I went through chemotherapy. I went from 37 to 62 kilos (137 pounds). But things did not get better, now I had one more thing to worry about, I had become diabetic.

Five years have gone by since the surgery, and while it has been very hard, I have stopped developing polyps. The oncologist released me last month, but I feel worse with every day that goes by. I am always very tired, and I suffer from pain that will not go away no matter what I do. I am happy that I did not get cancer, but a bit sad because I cannot enjoy it fully, pain and tiredness do not allow me to. Those around me do not see what goes on every day, this makes the situation even harder, because even if I can't, I have to do what is expected of me. They want me to be a perfect mother and wife, and that is too much sometimes.

I think it would be interesting if a rheumatologist could treat me, perhaps he could help me ease the pain. The other symptoms and problems are controlled, each with its own specialist.

I do not know whether all the things that have happened to me are related to my base illness, scleroderma, whether the hemangiomas in my liver, and the nodules in my kidneys, as well as my retina with a cyst can be associated to this. The only thing I know is that the muscular mass of the affected zones is decaying really slowly, at least something good is happening.

I love life, and I am willing to be here a long time, if you help me a little, it would be so much better. I would like to know whether in my city, Cáceres, Spain, there is somebody who suffers from scleroderma. Thank you for your attention.

To Contact the Author
Aurora
Email: pim433@hotmail.com
Story edited 08-16-06 JTD
Stor posted 09-26-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Translator: Alba León
Story Editor: Judith Thompson Devlin
LINKS
(Español/Spanish) Aurora: Esclerodermia Lineal
(Español/Spanish) Esclerodermia Lineal

Anemia
Diabetes
Hypothyroidism
Linear Scleroderma
Scleroderma Experts (EUSTAR)
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs 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 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
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 Avril: Morphea
 
SCLERO.ORG is brought to you by the nonprofit International Scleroderma Network (ISN). The ISN is a full-service nonprofit scleroderma charitable foundation providing stellar research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.
  1. Post a message in Sclero Forums!
  2. Email: isn@sclero.org
  3. English Email Form
  4. Español Email Form
  5. Italiano Email Form
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
United States
Toll Free Hotline in U.S.
Hours: 9am-3pm CST only.
Please leave a complete message, in English.
1-800-564-7099
Direct Line
1-952-583-5735
We are also known as the Scleroderma from A to Z web site.
© Copyright 1998-2010 International Scleroderma Network
All Rights Reserved