Patient & Caregiver Stories Main Menu

(English) 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

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Margot: Morphea, Linear and En Coup de Sabre


Red Berries by Sherrill Knaggs, ISN Artist I am a forty-five-year-old mother of three teenage children. I was diagnosed with morphea when I was nineteen years old.

I first went to a medical clinic when I noticed a small brownish mark on my stomach resulting in a doctor telling me I was wearing my jeans too tight! A few months later I was diagnosed with linear morphea, as the itchy brown tight marks had appeared on other parts of my stomach and back.

Over the first ten years of this disease I took various medications/creams and of course, none altered the path of this insidious disease. Although it is a very slow moving disfiguring condition, I am lucky that it is not systemic. My specialist told me my condition is likely to peter out in five years.

My linear morphea slowed around my mid twenties, but unfortunately I also developed en coup de sabre morphea, firstly a small patch on my scalp and neck, and then spreading down my face through my eye. Slowly, baldness progressed where the scleroderma patches occurred (on my face and scalp).

Six years ago I had an eye operation to re-position my eye forward about two centimeters, as the morphea had dissolved away all of the natural padding behind my eye so my eyeball was sitting against my eye socket. My eyelids would not do their job in lubricating my eye because they had nothing to open and close against resulting in dryness and ulcers on my bad eye. Four plastic implants now hold my eye in place. I am now facing a repeat operation because my eye has again moved backwards over the past six years.

Apart from depressions on the left side of my face which look darker than my natural fair complexion, I have extensive permanent hair loss on the top of my head. A surgical hair piece hides this very well.

I do not talk about this disease very much with anyone other than my very supportive immediate family. People probably find it awkward to inquire about my obvious facial disfigurement. I have been asked if I was in a car accident or burnt in a fire!

I keep telling myself that I am lucky that this disease is not life threatening, and fingers crossed, not hereditary.

To Contact the Author

New email address needed
Old Email Prefix: margotfinn
New email address needed 07-18-06 SLE
Story edited 08-04-05 JTD
Story posted 08-04-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Alopecia (Hair Loss)
En Coup de Sabre
Juvenile Scleroderma
Linear Scleroderma
Morphea Scleroderma
Types of Scleroderma
What is Scleroderma
PDF Brochure: What is Scleroderma?

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

Photo of JudithJudith 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!

Go to Maria: Scleroderma and Raynaud's
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.


SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA

Email [email protected] to request our Welcome email, or to report bad links or to update this page content.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

The most important thing in the world to know about scleroderma is!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.