Hi my name is Kathy. I have a 9 year old son, BJ who has linear scleroderma. He was diagnosed at the age of 4 years old. BJ and I would like to tell you our story.
It all began in June of 1995. BJ says, "I remember when I was in preschool and my class was making handprints. I couldn't make a fist or a hand print for my dad for father's day. I didn't know what was wrong with me because I didn't have my dark spots. I thought my hand was just swollen. Sometimes I would wake up in the morning or from a nap and I would fall to the floor." As a parent this had me scared and confused to think my child cannot walk and I had to carry him around. What was going on?
I took BJ to his pediatrician and she referred us to see a pediatric rheumatologist. It was like a nightmare being awake. The pediatric
rheumatologist had a hard time diagnosing BJ. BJ says, "I didn't like getting all of those blood test taken. It would hurt and make me cry."
At the age of 3 he was diagnosed with JRA, but in August 96 at the age of 4 years old BJ was diagnosed with Linear Scleroderma. It has been said that BJ might
never had JRA and had scleroderma all this time.
BJ is currently taking methotrexate and has had surgery on his arm and wrist. The
orthopedic surgeon lengthened ligaments and muscle in his arm and did a small skin graft on is wrist. His surgery was successful!!
BJ says, "Having scleroderma makes me angry. I don't like to feel different from the other kids." I tell him that everyone has something wrong with them even if you cannot see it.
BJ would like to send a little message out to all of the kids who have
scleroderma - "You don't have to feel alone, because I have it, too!" I would like to invite all parents
looking for support and friendship to please contact me. You do not have to be alone. We are in this together!!! Please feel free to email me anytime.
To learn more about juvenile scleroderma, please contact the Juvenile Scleroderma Network at: 1204 W. 13th St., San Pedro, CA 90731 - (310) 519-9511 or email
OutreachJSDN@aol.com
You may also visit or website at:
http://www.jsdn.org
BJ and I look forward to hearing from you :)
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