Hyperekplexia: a day in the life of a child effected

What is Hyperekplexia?

People affected with Hyperekplexia have an exaggerated startle reaction to stimuli. This stimuli includes visual, auditory and tactile stimulation.

A person affected with Hyperekplexia reacts to sudden stimulation by startling, this is a short period where voluntary movements are impossible, the stiffness is so severe that it prevents the individual from putting out their arms to protect themselves from falling thus falling straight to the ground like a log often resulting in injury.

Because of this exaggerated startle response the entire family must condition themselves to providing an environment within the home that is calm and quiet. Even simple things like closing a door, the volume on the television and washing dishes is enough to startle a child with Hyperekplexia. The outside world cannot be controlled. Barking dogs, cars and every day noises can make a child with Hyperekplexia feel insecure and frightened. Families must work together to provide a world within the home where the hyperekplexia child feels secure.

I would like to start a support group for families with a Hyperekplexia child. If you or anyone that you know has been diagnosed with Hyperekplexia please contact me carolstinson@yahoo.com.

Together we can make their world a better place.