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

Easter: Scleroderma

I have hope that my Lord will listen to my crying.

Flower for Easter by Shelley Ensz I am Iraqi and about sixteen years ago, I began my struggle with scleroderma. I had very good doctors in Iraq. They told me what would happen to me in the future.

Unfortunately, the bad circumstances in my country prevented our doctors from getting the latest medicines that could help to improve my status. So I came to Amman, Jordan in 1991 with my sister, Suzan, with the hope of getting a visa to any other country in which I could be treated, at least to minimize the amount of the pain I feel every minute of my life.

In my first years in Amman, I saw some doctors, but my health got worse with the medications they gave me, so I stopped taking them. Besides, the medicine also cost too much.

Now my whole body, especially my hands, has become hard like stone. I cannot eat anything, but soup. Even with soup, I have acid in my stomach, especially at night. My face has changed and I have lost a lot of weight. I know there is no treatment for this disease, and I know also I will never return back as I was before, unless by a miracle. All I want is to stop my pain.

For all the people with illnesses in this world, I am praying to get rid of their pain. I have hope that my Lord will listen to my crying and that He may do something to ease my pain.

To Contact the Author
Easter
Email:
najat_youkhanna@hotmail.com
Story posted 9-8-01
Story Edited 8-4-03 JTD/V1

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
LINKS
Arab Scleroderma Support
Heartburn
Sclerodactyly (hardened fingers)
Skin Fibrosis
Types of Scleroderma
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!
This Story is Featured in Voices of Scleroderma Volume 1
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
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 Ed: Father of a Linear Morphea Patient
 
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