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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
LINKS
Diffuse Scleroderma
Juvenile Scleroderma
Scleroderma en coup de sabre
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs 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 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!
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(Update) Dorothy: CREST Scleroderma for 39 Years I've learned many things over the years and the most important is having a positive attitude no matter what incurable affliction one has...
Yvette: Undifferentiated Connective Tissue Disease (UCTD) and Thyroid Cancer For now, I have accepted that the diagnosis of my core problem is not important. The way I choose to deal with it is...
Kathy: Generalized Morphea Scleroderma I finally pressured another doctor for a referral to a dermatologist and had a biopsy done and was finally told morphea scleroderma...
Karligash: Systemic Scleroderma (Republic of Kazakhstan) Young, beautiful, full of hope and expectations for my life, for happiness and love — that was me, 19 years of age...
(Russian) Карлыгаш: системная склеродермия (Республика Казахстан) Молодая,красивая,полная ожидания от жизни счастья,любви такая я была в 19 лет...
More New Stories: June 2009
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