Hi, my name is Shaz and I am writing to let you know about my seven-year-old son who has had morphea since he was five years old and has just been diagnosed with localized scleroderma.
It has been very hard for us to find much information on his condition and I am asking for anyone's help on this. He has morphea on his chest, shoulders, arms and hands. We are currently having the problem with his fingers starting to turn due to the skin tightening and it has spread quite rapidly.
When we were first told about the morphea we thought he would have a few spots but nothing else major would come of it. Now we have been told he could have some serious problems.
We have an appointment with a rheumatologist tomorrow morning and we are very anxious to find out more information about what we can do to help our son cope with this. Anyone who has any hints or ideas on how to help him please let us know.
I am so glad I found this web site as now I don't feel so alone on this scary journey which we have been forced to take.
Thank you for taking the time to read this and, hopefully, to help us.
Shaz New email address needed 01-18-05 SLE Old Email Prefix: thatsharonchick Story posted 9-1-03 ISN Senior Artist: Sherrill Knaggs Story Editor Judith Devlin |
LINKS Caregiver Stories Juvenile Scleroderma Localized Scleroderma Morphea |
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.
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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