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
Jan L.: Linear scleroderma and Vitiligo
I did not realize until recently how fortunate I was to have such a mild case.
Pink Geraniums for Jan by Sherrill Knaggs, ISN Artist I was fourteen when we noticed an indentation on my forehead, just below my hairline on the right. I had a history of eczema, so I already had a dermatologist. He diagnosed it as linear scleroderma (LS), and also discovered it in my mouth, on the right side of my upper gums.

We looked at orthodontic photos taken when I was ten, and it was starting then, although of course we had not noticed it. It was probably about this same time that I started developing vitiligo on the right side of my chest and down my right arm and hand.

The dermatologist was not concerned with my LS, although he showed me off at a conference in which a lot of doctors came in and said, "Ah! En coup de sabre !" One of them told me I should not worry, I looked great with it. I did not realize until recently how fortunate I was to have such a mild case.

The LS progressed over the next few years, down my forehead to my eyebrow and my lip on the right side is a bit drawn up; it also runs under my chin (it is probably technically morphea). The gum tissue in my mouth in an area on the top right side is thick and fibrous, and the gums have retracted over two teeth. One of those two teeth has become very sensitive, and interestingly, it is dying, but from the inside out and root canal will not help. I wonder about that, and if the disease has begun to progress again.

It seemed to go into remission when I was about twenty. I was not ever overly concerned with my looks, so I really did not pay that much attention to it. I did get great questions occasionally about the "scar" on my forehead. Often I made up a sad story about a progressive deadly disease. Now that I know more about LS, there's some irony there.

I am forty-three now, and except for a deep wrinkle between my eyebrows and an asymmetrical mouth, I look pretty normal.

The vitiligo has been progressing, although it is still only on my right side, the arm/chest/shoulder area. This summer it is pretty widespread on my chest.

One thing that made me think about a few days ago as I was talking to my gynecologist about interstitial cystitis, which I was diagnosed with several months ago, is that this is another of those weird, unknown-etiology diseases in which your body attacks itself (in my case, the protective lining of my bladder). He asked if I had other chronic, autoimmune-type disorders. I told him I was pretty allergic, but I did not think of LS.

It would be interesting to know if anyone else has had related disorders in association with LS. And what is the link between vitiligo and LS?

I know I am fortunate to have a mild case. I do worry a little about one of my children developing it, or vitiligo; but I guess we will wait and see.

To Contact the Author
Jan
Email: jleahl@yahoo.com
Story posted 06-11-06

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
LINKS
En Coup de Sabre
Interstitial Cystitis
Linear Scleroderma
Morphea
Morphea Stories
Vitiligo
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill KnaggsSherrill 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 Jane D: Linear Morphea (En Coup de Sabre)
Contact ISN. We are a full-service nonprofit agency.
Email: isn@sclero.org or
or post a message in ourSclero 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