There is no support group for Hyperekplexia in the UK. Families can use Contact a Family's freephone helpline for advice, information and, where possible, links to other families. Contact a Family's web-based linking service MakingContact.org can be accessed at www.makingcontact.org
Also known as: Startle disease
Hyperekplexia is an inherited genetic condition that mainly affects children and babies. An affected person will startle easily at a sudden sound, unexpected touch or bump, become stiff and may fall and be injured, because they cannot put out their arms to save themselves. When a baby startles, there may be a tendency for severe non-epileptic convulsions with increased stiffness and fast quivering. Even daily activities, such as bathing, may bring this on. These convulsions are potentially dangerous because they induce a severe syncope (loss of consciousness) owing to a lack of oxygen reaching the brain; these episodes can be recurrent and are also known as 'breathing attacks' or 'apnoea attacks'. Hyperekplexia responds well to treatment with benzodiazepines, and the condition usually improves as the individual gets older. Most individuals with hyperekplexia are of normal intelligence and may live as fulfilling and productive lives as other people, though some may show a delay in reaching developmental milestones, such as delayed speech or walking.
Is there support?
Talk to other families about Hyperekplexia
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Call us if you need information or advice on any aspect of caring for a disabled child. Monday to Friday, 9.30am to 5pm.
0808 808 3555