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
Audley: Mother of Linear Morphea (en coup de sabre) Patient
My motherly intuition told me that the diagnosis was not correct.

Flowers for Audley by Shelley Ensz Our 21 year old daughter, Diana, was diagnosed in August of 1999 with Morphea Scleroderma. Since it is on her face and head, she is considered to have the en coup de sabre type of Morphea.

After one diagnosis of Vitiligo, my motherly intuition told me that the diagnosis was not correct so we made appointments with two more doctors who confirmed the Morphea diagnosis. (One did a biopsy.)

We found a doctor in Birmingham, Alabama, Dr. Craig Elmets, who specializes in Scleroderma, and he used a UVA 1 light on Diana's lesions for approximately six months. She has shown no signs of the disease progressing.

She is a very happy and beautiful girl and covers her scar with Dermablend. Since the one scar on her forehead is en coup de sabre, it is indented so her skin is uneven there. She deals with it wonderfully. The area on her scalp is right at her "part-line" and because she has lost hair in that area, she parts her hair on the opposite side and it looks fine.

If you need information on the doctor who treated her, feel free to contact me via e-mail at audloe@aol.com

God bless you all!

To Contact the Author
Audley
Email: audloe@aol.com
Story posted 4-20-02
LINKS
Dermablend
en coup de sabre
Juvenile Scleroderma
Vitiligo
ISN's Voices of Scleroderma Volume 2
The story on this page is featured in our book, Voices of Scleroderma Volume 2 ! International Scleroderma Network.
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 Aurora: Linear 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