A poem written by the mother of a daughter with Juvenile Scleroderma

When you see me running with my friends,
Be happy for me that I am having a good day
Because I have scleroderma and I am only eight years old.
When I say I can't do something, please don't force me,
I have scleroderma and I am only eight years old.
Please don't think that I am faking it
I want more than anything to be like other kids
Because I have scleroderma and I am only eight years old.
Please don't say scleroderma is for old people
I have scleroderma and I am only eight years old.
Please don't compare my illness with coughs and colds
Antibiotics won't help me,
I can't be cured - ever - only controlled.
I have scleroderma and I am only eight years old.
I was probably up most of the night because of the pain
I have scleroderma and I am only eight years old.
Please believe me when I say I am trying my best
A lot of things are just too painful to do,
Because I have scleroderma and I am only eight years old.
Please forgive my sometimes inappropriate behavior
Medication causes nasty effects,
Because I have scleroderma and I am only eight years old.
Please don't contradict my doctor with what you have read
I trust him because I have scleroderma and I am only eight years old.
When my parents need to talk, please listen
This is very hard on them
Because I have scleroderma and I am only eight years old.
Look at the sadness in the eyes of my family
Because I have scleroderma and I am only eight years old.

For more information on Juvenile Scleroderma, contact:

Juvenile Scleroderma Network, Inc.
1204 W. 13th Street, San Pedro, CA 90731

Tel: (310)519-9511 (Pacific Time)
24 Hour Support Line: 1-866-338-5892 (toll-free)

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