Information and inspiration for scleroderma patients and caregivers. Serving people in Illinois, Wisconsin and Indiana.
If your child has recently been diagnosed with scleroderma or juvenile scleroderma, you have probably been searching the internet for information pertaining to it. You have a multitude of questions about this disease and this information is this article is geared towards helping you accomplish just that.
There are two forms of scleroderma: localized and systemic. Children are more likely to be diagnosed with localized scleroderma rather than systemic. Systemic scleroderma occurs more in women between the age of 20 and 50 but if your child has this illness it is extremely rare. Localized is less severe because it does not cause damage to your child’s internal organs like systemic. Systemic scleroderma is a chronic, degenerative disease that involves the skin, joints, and internal organs. In many instances, the first symptom that occurs is the Raynaud phenomenon. The following is a link to a brochure for juvenile scleroderma: http://www.scleroderma.org/site/DocServer/Juvenile.pdf?docID=316
After being diagnosed, children attempt to come to terms with what having this disease means to them. It is important to help the child understand the disease and what will be happening to them. Also, you should help the child to come up with simple explanation for any visible discrepancies on their skin. This will keep the child from having to struggle to find some explanation or from being embarrassed about the situation. You should encourage children to continue to socially interact with theirs peers.
Connecting with Others: Additional Resources
The following is a link to read other children’s stories to let your child see that they are not alone. http://www.scleroderma.org/site/DocServer/Juvenile.pdf?docID=316
.Would you like to connect with other parents and ask questions about scleroderma? There is an online community called “Inspire” offered through the Scleroderma Foundation that allows you to communicate with other parents. https://www.inspire.com/groups/scleroderma-foundation/