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
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 address needed 10-10-06 SLE
Old Email Prefix: llats
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
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 Lorna: Undiagnosed Scleroderma?
 
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