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Deafblindness

The Nordic Network on CHARGE Syndrome

childrens hands playing with colourful lego

CHARGE is a rare syndrome that can be caused by a congenital genetic mutation. The symptoms of CHARGE affect several of the body’s organs and often involve hearing loss, visual impairment, and balance difficulties, and require a great need for medical treatment and special educational efforts. We have little knowledge about the syndrome, which was first identified in 1981.

Children with CHARGE syndrome often have life-threatening conditions from birth, such as heart problems and breathing difficulties. It is common for them to undergo frequent and lengthy hospital stays, and surgery and treatments are often necessary. Swallowing and breathing problems can also cause difficulties when the child comes home from the hospital, and these problems sometimes persist their whole lives.

The senses of smell and taste, along with muscles, and joints, are – in addition to hearing, vision and balance – also frequently affected. The impairment of multiple senses results in delayed development for children. At the same time, intellectual capabilities may lie within the normal range.

Learn more about CHARGE

People with CHARGE often employ a range of strategies to compensate for their inner stress and their disabilities. You can read more about these aspects in this brochure (Swedish) from the Swedish National Information Centre for Deafblindness Issues (NKCDB).

NKCDB has additional material (in Swedish), including a brief description of CHARGE syndrome and a review of a medical care programme for people with CHARGE syndrome.

Material

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