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CDC develops new tool kit for parents of teenagers with epilepsy

You Are Not Alone is a toolkit developed by the Centers for Disease Control (CDC) specifically for parents of teens who have epilepsy.

According to the CDC, parents know that the transition from childhood into adulthood often includes emotional, psychological, and social challenges for any teen. But a teen with epilepsy, especially when newly diagnosed, may have additional anxiety and confusion due to epilepsy's complexity and unpredictability. When other people (including teachers, other children, and other parents) do not understand or are afraid of this teen who may appear different, a communication barrier can develop, creating further misunderstanding, isolation, and discouragement. Parents can play an important role in preventing this. When their children with epilepsy become teenagers, they can encourage and assist them in taking responsibility for themselves, while at the same time helping them accept the limitations on their freedom and choices that may be necessitated by the seizure disorder. The materials in this toolkit are designed to support this effort.

The kit includes:
Print Materials
Parent's Letter
Letter describing kit material from a parent of a teen with epilepsy.

Facilitator's Guide
Strategies and suggestions for use of kit materials by facilitators of Support Groups.

Parent's Guide
Strategies and suggestions for use of kit materials by parents.

"Reach Out" Brochure
The stress of parenting a teen with epilepsy affects the whole family, including one's marital relationship and relationships with other children.  This brochure includes tips and strategies on how to keep one's self, one's marriage, and one's relationships with other children healthy.

"Reach Out" Resource Guide
The Resource Guide includes a list of parenting resources as well as family support groups throughout the country and sources of relevant and useful information.

Stationery (PDF – 181K)
A set of preprinted sheets that can be used by parents and professionals to write messages to teachers, neighbors, coaches, employers or other adults who come into contact with their teen.  The information on seizure first aid at the bottom of each page provides an opportunity to educate the reader about the appropriate response to a seizure. Each sheet carries a different parent quote that advocates for the teen and helps to sensitize and educate the reader.

You can read the full epilepsy guide for parents of teenage children by clicking here .

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