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
Nickole: Surviving Daughter of Diffuse Scleroderma Mother
It is not easy, but you must be very supportive and patient

Lacebark Flowers for Nickole by Sherrill Knaggs, ISN Artist I was ten years old when my mother died of scleroderma. That was in 1989. I remember her being very sick all the time and going to the hospital on a regular basis. Her skin was really hard and she lost a lot of weight. It was hard on our family. I helped my mother out a lot with dressing, cleaning herself, and taking her to the bathroom.

She eventually was in the hospital for good, and that is where she died. I am not sure how long my mother had scleroderma, but I do know that the doctors did not know much about it at the time. My mother's kidneys failed her first, then her lungs.

I miss my mother a lot. Now that I am older I try to research as much information that I can on scleroderma. I want to know about the disease and try to understand what was going on with her.

I feel for the families of these scleroderma victims. It is not easy, but you must be very supportive and patient. They are going through a rough time, as with any disease.

To Contact the Author
Nickole
Email: Email withheld by request
Story posted 3-25-04 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Diffuse Scleroderma
Kidney Involvement
Lung Involvement
Scleroderma
Survivor Stories
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
Donna: CREST, Raynaud's, possible Fibromyalgia I was diagnosed with CREST (Limited Systemic Scleroderma) by a rheumatologist in 2006. This wasn't really a surprise to me as my mother was diagnosed with diffuse scleroderma in 1998...
Jessica G: Parry-Romberg Syndrome By the time I was about five years old, the disease had already disfigured my left side drastically. I have had over fifty operations and surgical procedures for Romberg's....
Leslie R: Scleroderma, Vitiligo, Lupus, Anemia, Hypertension and Type 2 Diabetes He told me that I have scleroderma and explained what this disease is about. After suffering so long I finally got some answers...
More New Stories: Feb-August 2008
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Kannada  | 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 Nico: Daughter of Patient with Systemic Scleroderma
Contact ISN. We are a full-service nonprofit agency.
Email: isn@sclero.org or
or post a message in our Sclero Forums !
Shop, Join or Donate Now
(Also see: Contact ISN )
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 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