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Margot: Morphea, Linear and En Coup de Sabre

Australia

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.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

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 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!

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.