Over 2,200+ pages in 22 languages!
 
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
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Christene: Limited Scleroderma
I was diagnosed when I was just nineteen and at that time it was one of the scariest moments of my life.

Kangaroo My name is Christene and I have been living with limited scleroderma for five years. I was diagnosed when I was just nineteen and at that time it was one of the scariest moments of my life. I felt I was being punished and blamed myself for not looking after my health.

I did not have any real support as my parents lived in Western Australia and I had just started a relationship. It was very hard for my partner to cope with this new illness and it put a lot of stress on the begriming of our relationship but somehow we coped and stayed together for four years.

My main fear was what was I going to do with my life. I was so young and did not know how was I going to cope with scleroderma. In 1999, I was admitted into a hospital three times with very severe ulcers on the tips of my fingers. At that time I was terrified of needles and had to have quite a few, so I soon got over those fears and have become quite used to regular blood tests.

In the last five years I have had three operations on my right index finger, two on my left index finger and most recently two on my right thumb which was difficult as I am right handed. I have also suffered from a blood clot in my right leg, fluid on my left lung, and reflux esophagitis.

I believe that I can live a full life even when things get me down and although I do not have a career set in my future, I know I can succeed in anything I put my mind to. Although it has taken me five years to accept this illness I have remained strong and know that I am not going to die young, well, at least I hope so.

I know scleroderma is hard to get used to, and I have found it difficult to come to terms with it. I believe we can succeed at anything we put our mind to, as long as we remain true to ourself and stay calm when things go wrong.

This is my short story and I hope it may also help some other scleroderma sufferers with the journey in life, love and the big wide world.

To Contact the Author
Christene
Email: jrfrench2002@yahoo.com
Story edited 12-15-04
Story posted 12-16-04 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Digital (Finger) Ulcers
Fluid on lung (Pleural Effusion)
Limited Scleroderma
PDF Brochure: What is Scleroderma?
Reflux (Heartburn)
Types of Scleroderma
What is Scleroderma?
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 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
Alana: Scleroderma (Peru) 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...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me...
More New Stories: November 2008
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.
Keep on Surfing!
Go to Christin: Linear Scleroderma
Contact ISN. We are a full-service nonprofit agency.
Email: isn@sclero.org or
Post in Sclero Forums!
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
USA
Toll Free Hotline in U.S.
1-800-564-7099
Direct Line
1-952-831-3091 (U.S.)
(We are also known as the Scleroderma from A to Z web site.)
© Copyright 1998-2008 International Scleroderma Network
All Rights Reserved