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Mandy: Mother of a Morphea Patient
The second dermatologist we saw was so pessimistic that I could not stand to expose my daughter to more than the initial visit with him.

[Caterpillar] My daughter was in the eighth grade, busy with end of school year activities and in training with her swim team, when she noticed a hard area on the right side of her neck.

She had an upper respiratory infection weeks earlier with some swollen glands, but if this was still a swollen gland it had persisted for too long. It was time to see the doctor.

The doctor examined the area and gave her an antibiotic to clear up her "adenopathy". When the area had not improved after two weeks, he referred her to a surgeon for a skin biopsy.

The surgeon examined the area and questioned my daughter. "Was she positive that she had not burned her neck with a curling iron?", for by now the area looked much like a scar — pale and shiny. The biopsy was performed and the results returned as "nonspecific dermal irritation". We were given a steroid cream to apply to the area and after four weeks there was no improvement. The surgeon referred us to a dermatologist.

Currently, we are seeing our third dermatologist. My daughter is in tenth grade, still busy at school and still swimming with the team. The first dermatologist we saw was forced to retire due to illness, but did establish a diagnosis of morphea. The second dermatologist we saw was so pessimistic that I could not stand to expose my daughter to more than the initial visit with him. The current practitioner has my daughter using Vitamin D cream and ointment on her lesions. The entire right side of her neck and jaw is now involved.

My daughter worries about how many more lesions will appear. But I do not believe that she dwells on it. She has many nonspecific aches and pains which make me wonder if they are related to her Morphea, or are they merely to be expected in an atheletic teenager?

I read many articles on the Internet about possible causes of Localized Scleroderma. No one has ever offered to do any kind of blood tests on my daughter, and when I suggested doing a test for Lyme Disease to my family physician he looked at me as though I was totally deranged. I was also told that I should not believe everything that I read on the Internet.

So, we wait to see if the newest cream or ointment will have any effect. And we wait.

To Contact the Author
Mandy
New email address needed 08-01-06 SLE
Old Email Prefix mandy
Story posted 11-4-00

Story Artist: Shelley Ensz
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Caregiver Stories
Morphea Scleroderma
Juvenile Scleroderma
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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