TV Video: Hannah - Health Insurance Story. View her fight for insurance coverage for the SCOT Trial, with David Becker, ISN Assistant News Guide.
Tackle Scleroderma! Join/Shop/Donate
SCLERO.ORG by the nonprofit International Scleroderma Network (ISN) is a full-service nonprofit charitable foundation providing stellar research, support, education and awareness
Search sclero.org:

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
Pearl: Surviving Daughter of Pulmonary Fibrosis Patient
We love our mother with all our heart and watching her leave us, no one can imagine what it is like unless you have experienced it yourself.

Flower for Pearl by Shelley Ensz, ISN Artist On April 18, 2006, my mother died of fibrosis of the lung. We watched her struggle daily to breathe, yet there was nothing anyone could do, not even the doctor.

She was diagnosed about four years ago, first as pneumonia. We watched her lose weight at a rapid pace and her breathing became more difficult.

In her final stage she was bedridden and the oxygen she was taking no longer could produce any air to her lungs. She asked to go to the hospital on Monday April 17, 2006. She said that she was going to die that day, but instead she died early Tuesday morning about 1:40AM.

Our family is devastated. There was nothing we could do. We love our mother with all our heart and watching her leave us, no one can imagine what it is like unless you have experienced it yourself.

My mother was seventy-five years young.

I hope that there is a cure soon. There seems to be some form of medicine you can take for every other illness to prolong your life, but there is nothing you can take for fibrosis of the lungs, in the later stages.

To Contact the Author
Pearl
Email: Withheld by Request
Story edited 05-01-06 JTD
Story posted 05-02-06 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
LINKS
Survivor Stories in Memory
Fibrosis of the Lung
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 Peggy: CREST and Raynaud's
 
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 1998-2009 International Scleroderma Network
All Rights Reserved