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Maggie M: Lichen Sclerosus et Atrophicus and Generalized Morphea

I feel better after treatments, but my skin is taut and really hurts if I move around very much.

In the summer of 2006, I had a spot on the top of my right foot. I went to my doctor. and was given a topical cream to use which never eased the redness or skin discomfort.

In the fall, I was prescribed ciprofloaxin for a bladder infection and a week later I had a red rash and hives on the arms, back, and legs and later the skin peeled as if I had a sunburn. I had to seek medical help when I realized that it was spreading and getting considerably worse.

I went to my family doctor and had tests that ruled out scleroderma, and several other diseases. I was referred to the Mayo Clinic in Scottsdale, Arizona, and was given a topical ointment which was so greasy it was hard to use. Biopsies were taken of two different spots.

I was diagnosed with lichen sclerosus et atrophicus and generalized morphea. The dermatologist prescribed UV Narrowband treatments, which I did for two weeks, three times a week. We then returned to Iowa and I had to go to another doctor and was started on UVB light treatments and have had seven sessions. I quit using all prescription creams.

For showering I use a gentle body cleanser and wash it off with lukewarm water and then pat dry and put on cetaphil body lotion.

My skin that is affected is on both arms, from wrist to armpits, both sides of my stomach from below my breasts to below the navel along the sides, on my lower back and spots on back of shoulders. Also behind both knees on the front of my shins and a few random spots near knees and along back of my arms.

After six weeks of treatment I will return to the doctor to assess the treatment. I feel better after treatments, but my skin is taut and it really hurts if I move around very much.

~ Update 02-04-08 ~

After having UV light therapy all summer, my skin started to improve slightly in July, and I stopped treatments the last part of October 2007. We were getting ready to leave for Arizona for the winter. I quit using all lotions and creams as they only irritated my skin and made it burn. But it has improved as I can now wear normal clothing. I have improved quite a bit but still have a way to go. The skin is red in spots and a little sore, other areas are either white rough splotches. All the original area is still affected but just not as bad or as painful.

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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!

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