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
Lori S: Mother of Eosinophilic Fasciitis Patient
As a mother, I felt compelled to get a second opinion.

Ramblin' Rose for Lori S by Sherrill Knaggs, ISN Artist My daughter, Lindsey, age fifteen, has been a diabetic since she was five years old. Since late last fall 2002, she has complained of fatigue and muscle soreness. I thought this was because she was not getting enough sleep so I brushed it off.

Early this winter she showed me her arms and legs and they felt very hard. I rushed her to the doctor who was very concerned but was told by the head of pediatric endocrinology that this was a condition common in children with uncontrolled diabetes.

As a mother, I felt compelled to get a second opinion. During my appointment with her endocrinologist I mentioned her arms and legs and he said she needs to see a rheumatologist. The first visit to the rheumatologist was extensive. She knew my daughter had some connective tissue disease but was uncertain whether it was scleroderma or scleredema.

The rheumatologist consulted a dermatologist who did a biopsy which came back inconclusive, so a second one was done. They went further into the fascia and confirmed the diagnosis of eosinophilic fasciitis (EF).

She was initially placed on cimetidine and then methotrexate. She has only been on methotrexate for a month and so far there has been no change. They are holding off the corticosteroid therapy due to the fact she is diabetic.

I would like to talk to other parents or patients with this similar disease.

To Contact the Author
Lori S.
New email needed 10-10-06 SLE
Email: llats@georgia.com
Story posted 6-28-03

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Caregiver Stories
Corticosteroids
Diabetes
Diabetes Stories
Eosinophilic Fasciitis (EF)
Rheumatologist
Scleredema
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 Lorna: Undiagnosed 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