[Skip to Content]
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
Stories in Other Languages: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010

Joyce R: Scleroderma En Coup de Sabre

Next week the spot was three times bigger!

Blue daisy for Joyce by Sherrill Knaggs, ISN Artist I was just surfing the Internet when I found this page. I felt a great urge to contact other patients like myself.

When I was fifteen years old, somebody at school pointed out to me the fact that there was a white spot in the middle of my forehead, just below the hairline. I thought it was nothing, but then more people started to notice. I realized that this spot was actually growing. So I decided to go see my doctor, and he measured the spot. He told me to come back next week, to see if it was actually growing like I thought it was.

Next week the spot was three times bigger! My doctor sent me to a dermatologist, and the dermatologist took two skin samples. When I went back two weeks later, the dermatologist told me he was not sure what the spot was. He then let about six other doctors come in and look at me. Then the doctors debated for about a half hour and they told me it was scleroderma en coup de sabre. Unfortunately, they did not know anything about it so I looked it up on the internet. Not a good thing to do, especially not when the first stories you get to read are the ones about diffuse scleroderma. I totally panicked.

Luckily, a scleroderma group from California sent me a booklet, in which they explained my situation. I was so relieved.

I am twenty-two years old now, and the scleroderma is still there. I have a white stripe dividing my forehead into two parts, and I think there might be something growing next to it on the right side. I hope there are people that read this story before they jump to the wrong conclusions, like I did!

If you want to to contact me, feel free to do so.

With many thanks to all the people who have tried to put as much information out there as there is.

To Contact the Author

Joyce R.
Email: JoyceRomkes@hotmail.com
Story posted 1-9-04 SS

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Diffuse Scleroderma
Juvenile Scleroderma
Scleroderma en coup de sabre

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 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

We are revising our personal story submission program. If you would like to post or update an existing story on our site, please email isn@sclero.org.
Sheri M: CREST Syndrome (Update) It has been three years since I've posted and I am happy to say I am still doing well...
Go to Joyce T: Scleroderma with Pulmonary Hypertension

SCLERO.ORG is operated by the International Scleroderma Network, which is a full-service U.S. nonprofit 501(c)(3) established in 2002. We provide stellar worldwide research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. Donate or Shop Now.

Questions? Post a message in Sclero Forums or email us directly at isn@sclero.org. Or call our Scleroderma Hotline (English only), Toll Free in U.S. 1-800-564-7099 or Direct at 1-952-831-3091. Ask for our Welcoming Email.

Our headquarters postal mailing address is: International Scleroderma Network (ISN), 7455 France Ave So #266, Edina, MN 55435-4702, United States.

The most important thing in the world to know about scleroderma...is sclero.org!
Home   Medical  News  Sclero Forums  Support  Translations  Donate or Shop
Copyright 1998-2015, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.