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Beth: Morphea Scleroderma

"My dad used to tell me I could join the circus and be a side show as the spotted girl."

Acquilegia by Sherrill Knaggs, ISN Artist My story began when I was six years old, and continues today at age 36.

My first Morphea spot appeared on my left shin, it was about the size of a dime and grew to size of a oval silver dollar. My mother took me to the doctor and he said it was a bruise that never healed. We never thought anything more about it until I was ten, when my mother asked me who had been grabbing me around the waist. My waist and my lower back had red marks like I had been squeezed. Soon after the marks started to enlarge and change shape and take on a different color. My mother took me to a dermatologist and I was told that I had very dry skin.

These spots went through several stages of activity. They first had a reddish purple ring around the oval and the center was white and scaly. Then when the activity stopped the reddish ring darken to brown like a scar and the center stayed white, but not scaly.

Later on when I was a teenager, I went to another dermatologist to see what they had to say. I was told I had Morphea but they did not know much about it and could not tell me anything about it other than what they had read about it.

I went on for years explaining to every doctor that I ever had to see for regular medical visits, that I am not being beaten by anyone. I would inform them that I had Morphea, some kind of rare skin disease.

When I had my first child I was very scared that this would be something I would pass on to my child. My doctor assured me this was not something hereditary. As my stomach grew the spots did not, they did not change at all. I had my first child at age 19, had another at age 21.

All these years I never had any new spots appear, until I had my third child at age 29. All of a sudden, several months after that birth, my back, sides and stomach had all new spots and these were in size of a dime to a six inch oval. I was horrified. Why, all of a sudden, are these things coming back? What is triggering them to appear, and this time, in such a mass quantity?

I went to my family doctor and he said he thought I might have scleroderma. So he sent me to see another dermatologist. This dermatologist was familiar with Morphea and actually had another patient with it but not to the same degree as mine. He put me on Accutane which is used for acne and he said studies had been done that proved this medication would stop the spot's live activity and make them dormant. I took the medication for six months and the spots seemed to have finished their cycle, but I do not think it was the medication, I think they just ran their course.

Within a few years, more new ones started appearing all the time; however, these are not really large ones. They are about the size of a quarter and smaller. Some of them do not have the oval shape or the white middle. They are dark brown, bruise-like spots. What seems weird is that they seem to be in areas that get pressure trauma. For example, one day I was carrying a grocery shopping basket on my arm between my wrist and elbow and the basket was heavy. Then the next day or so I noticed marks on my arm and I remembered that I had carried that basket. The doctor said that has nothing to do with it.

My spots have pretty much stayed on my trunk and I have little brown ones on my chest by my arm (where my bra strap lays) and all over my back and just the same old one on my leg shin.

I really have not been too upset about these, mainly because my clothes cover them. What really got me sparked to search for information is because my oldest daughter has had one spot on her ankle since she was ten. That spot has grown to be about six inches long and it is very dark brown. When my daughter was ten, our family doctor said it was the same thing I have. We did not believe it because it did not have any of the characteristics of my spots. She is 18 now, and this spot has grown from two inches (when she was ten) to six inches, and it really bothers her because it is very noticeable. I looked at it the other day and it now has similar characteristics of the oval shape with a darker ring. I feel sorry for her because I sure would hate to see her all of a sudden start getting these all over her body.

Well, that's my story. I am very excited to know that there are so many people out there who have this same thing. It is nice to hear familiar stories. I do not feel like such a freak. My dad used to tell me I could join the circus and be a side show as the spotted girl.

Thanks for letting me share my story.

To Contact the Author

Beth
Email: [email protected]
Story posted 8-13-02

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Juvenile Scleroderma
Morphea
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!

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