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Gena P: Morphea

All I heard was the word disease.

Red Hibiscus by Sherrill Knaggs, ISN Artist I was diagnosed with morphea at the age of twenty-seven. It was a long process for diagnosis.

I first went to my family doctor. He sent me to internal medicine. The internist said she had never seen anything like it and wanted to do an ultrasound of the area. The ultrasound did not reveal anything abnormal. She did not really refer me anywhere else.

But on my next gynecology visit, the doctor commented and asked me what it was. I told him that maybe he could tell me as I had already seen two doctors who could not tell me what it was. He said the tissue appeared to be necrotic and wanted me to see a surgeon. I was a bit overweight from two pregnancies and the surgeon simply looked at me and said, "I wouldn't do anything to you unless you lose some weight." He never even examined me or the thickened discolored areas of skin.

I had one indented area on my stomach around my waistline that was thickened and purplish in color. My inside ankle was whitish and shiny and the inside leg right below my knee was indented. My upper thigh has ripples with whitish patches in the crease of my leg at the hip area.

I finally showed them to my mother. She suggested that I go to a dermatologist. He took one look at me and told me he thought I had morphea. Then he began to explain the disease to me. All I heard was the word disease. Things went black and I felt like I was in a tunnel and could not see or speak. I think I was close to passing out.

He told me not to go to the library and look anything up because I would not find much and what I did find would scare me because it is a form of scleroderma. He said he did not feel I had systemic scleroderma which is a fatal disease. He did blood work that confirmed that I did have morphea (which is very different from systemic scleroderma).

I had lost range of motion in my ankle. He gave me a steroid cream to use and said that they were testing the use of Potaba. He said some patients have seen some results in using the drug with increasing the flexibility of the bound down tissues and that it would then increase my range of motion in my ankle. He said it may or may not work.

I tried the drug and did see results. I do not recall how long I took the drug but do recall having to take thirty-six pills a day. It was six pills, six times a day.

I am now forty-one and the scarring is still present in some ways worse than before. Sometimes it is painful at the upper thigh and waistline area where the elastic from my underwear or the waistband of my pants rests on the scarred tissue. I still have large purplish skin on my side, stomach, and back along with white patches of skin. The white patches seem to be the most painful.

I am wondering if plastic surgery is an option and if the diseased tissue can be cut away. I plan to see a new dermatologist and find out what my options are.

My diagnosing doctor left the area about a year after I was diagnosed. He had told me that unless I had new symptoms I did not need to keep seeing him. I never established myself with another doctor after he left.

To Contact the Author

Gena P.
Email: [email protected]
Story submitted 02-20-06
Story edited 02-20-06 JTD
Story posted 03-24-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
Difficult Diagnosis
Morphea Stories

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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