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Chris S: Mother of Linear Morphea Patient

My beautiful boy.

Pine Cones by Sherrill Knaggs, ISN Artist I have a beautiful boy who will be four soon. He was diagnosed last week with linear morphea, but does not show the typical characteristics of morphea yet. He has a red line that begins halfway down the left side of his nose and curves around the nostril flare.

Three months ago I noticed what appeared to be a very small bruise on the left side of his nose. As active as he is, I assumed it was a minor bruise. But the bruise turned red, even a solid purple color, and would come and go. Whatever it was, I knew it should not be there and decided in August to see his pediatrician, who referred us to a dermatologist who thought it was morphea.

She then referred us to a pediatric dermatologist who confirmed the linear morphea diagnosis. Now she has referred us to a pediatric rheumatologist and we wait. We are applying two topical medicines but I am sure the pediatric rheumatologist will prescribe an oral medicine, too.

I have so many questions! I have been told that the disease affects different people in different ways, so as much as I would like to prepare myself for what is to come, I cannot!

I have searched the internet in order to find another pediatric patient with linear morphea on the nose but so far have not. I do not know if we have "caught" this early enough so as to not see the typical signs or if it is simply a waiting game until those signs show up.

I do know that whatever happens, he will always be my beautiful baby boy, inside and out, and he will hear that until the day this momma is out of breath.

To Contact the Author

Christine
New email address needed 08-06-09 SLE
Old Email Prefix: ceseeck
Story edited 09-13-06 JTD
Story posted 10-25-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
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Caregiver Stories
Juvenile Scleroderma
Linear Scleroderma
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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!

Go to Christina N: CREST Scleroderma
 
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