A definition of Juvenile Scleroderma in simple, easy to understand language

Winter Tips for Parents
Written by Mary Anne Panepinto
Parent and Editor Consultant - For Kid's Sake newsletter
Brooklyn, NY

  • Ask your doctor to provide an undated letter explaining your child’s condition and limitations if any. You may want it to say “as tolerated” on things such as gym since your child may want to participate on a good day and sit out on a bad day. Give a copy of the letter to the teacher(s), school nurse, school based support team or guidance counselor and have one for your child to carry in their book bag to show to anyone else in authority (maybe one day a substitute or a lunchroom aide). This will stop anyone in their tracks that doesn’t want to accommodate your child.
  • Ask the school for a second set of books to keep at home so that your child doesn’t have to lug a heavy book bag around.
  • Get the name of the “go to” person in the school, usually an assistant principal or a guidance counselor. Touch base with this person early in the school year and then they will know who you are when you come calling with issues later.
  • Make sure you are getting all the services that the school district gives to children with disabilities, research “Section 504”, these services follow the child through their lifetime and are mandated by law.
  • If your child has issues with the cold, such as Raynaud’s, provide the child with lots of pair of inexpensive small gloves – for class, gym or anywhere – always have a few because they get lost easily.
  • Ask for your child to be able to wear sweats to gym instead of skimpy shorts and a tee-shirt. They will be warmer and their arms and legs will be cushioned from contact with the cold gym floor.
  • Pick up some of those hot packs that are used by construction people or football players – the ones that you smack against your leg and they become heated and stay warm for hours. Keep them in the book bag just in case a cold situation comes up or a little heat is needed anywhere.
  • Set up a system for getting homework from a friend when your child is at home. These days many schools post homework on the internet which makes it easy to keep up.
  • Always try to get you doctors to work with your child’s schedule. If the activities they enjoy are bumped for the doctor’s visits they will resent going even more. It is bad enough that they need to see doctors therefore, the doctors needs to work with you and your child when scheduling visits.
  • Try to remember to keep life as normal as possible, don’t set limits on activities because something might happen, they need to be kids and do kid things as much as possible.

Please keep in mind, this webpage is for your information only.
Please check with your child's physician for any treatments.

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)

Speak to another JSD parent for emotional and logistical support provided by home-based JSD volunteers. For medical advice, please contact your child's physician.

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