In the March/April issue of Neurology Now there is an article about how to talk to your kids about your chronic disease. They wrote the disease from the perspective of neurologic disease, but a lot of it applies to any chronic disease, scleroderma included.

The authors suggest that you should always try and explain as much to your kids as they can understand. Some specific suggestions:

• Stay calm: move beyond your own fears
• Don’t overwhelm your child: explain that you may tire easily or not be able to fix their toys, but don’t talk to them about the worst-case scenario
• Use their questions as your guide
• Accentuate the positive
• Trust your child to accept you: parents are often surprised about how accepting their kids are about their condition
• Prepare for emergencies: pick emergency contacts well ahead of time and teach your kids how to prepare for emergencies.
• Know that kids want to help
• Encourage peer support
• Never blame your child for your disorder

That last one seems obvious, I must say, but kids often think they cause bad things that happen to the people that they love.