What's it like being a parent to a child with CIPA? Children with disabilities have special needs, and children with CIPA have very specific needs. Parents try to maintain a balance between being vigilant and trying not smother their kids by being overprotective. Parents with a child with CIPA might feel very isolated -- because it is such a rare disorder, most people don't understand what daily life involves. If there are other siblings, a parent might worry about the family revolving around one child and leaving the other out. Parents worry about their child being accepted by his peers, what his future will be like and what will happen to the child when the parents are no longer around.
CIPA doesn't have a cure, at least not yet. So instead, people with CIPA and their families have developed some adaptive strategies to help them in their daily lives. Each person with CIPA needs an individualized plan of care that helps with his own symptoms.
- A child might wear protective eyewear so he won't scratch his eyes.
- Parents may teach a child to get help whenever he sees blood on himself -- he might not feel any pain, but he can learn to recognize the sight of blood as a sign of danger.
- When a child is very young, it can be helpful to simply check him all over for injuries at intervals during the day.
- Because people with congenital insensitivity to pain have difficulty telling when they need to use the restroom, setting a timer on a wristwatch can help remind them.
- Physical therapy can help with specific problems caused by CIPA, especially with the joints. It may be helpful to use a wheelchair if joints deteriorate. A person with congenital insensitivity to pain might need occupational therapy to learn different ways to sit and perform other physical tasks in order to put the least stress on the joints.
- Families with a child with CIPA can even find it helpful to move to a cooler climate, so they can worry less about the risk of overheating. It's difficult for someone with CIPA to exercise, but an activity like swimming might be a good bet.
- Most families childproof their house, but this is especially important for families with a child with CIPA. Families must make sure that anything hot or especially dangerous isn't easily accessible.
People with CIPA and their families can benefit from being in contact with other families with the same issues. Gift of Pain is a Web site set up by the Gingras family, whose daughter Gabby has CIPA. HelpRoberto.com takes you inside the life of a young boy with CIPA. You can see video and photos and read a blog about Roberto's life.
As with any rare disease, the future for CIPA is in research. With luck and a lot of research funding, people with CIPA and other HSAN disorders might be able to go about their daily lives more easily. To learn more about CIPA and related topics, explore the links on the next page.