The Nordic Network for CHARGE Syndrome
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 know fairly little about the syndrome, which was first identified in 1981.
The Nordic Network for CHARGE Syndrome was established in 2002. Since then, the network has focused on collecting, sharing and disseminating knowledge about CHARGE syndrome. From their respective countries, network members report on and disseminate results from projects, conferences and publications relevant to the area.
Among other things, the network has mapped pain felt by those afflicted and gained new insights into how pain can be perceived and expressed. Another focus area has been communication and what tactile communication support may entail. The social aspects in different environments have been discussed in the network on multiple levels in recent years.
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.
Research Making Headway
Pamela Ryan, School Psychologist at Perkins School for the Blind, provides an overview of CHARGE syndrome. In this video, she talks about features, characteristics, medical complications and how they manifest themselves in children with CHARGE.
Timothy Hartshorne speaks about behavioural issues associated with CHARGE syndrome in this video. He emphasises that by better understanding the unique characteristics and how they interact, we can gain a better understanding of related behaviours.
CHARGE syndrome is caused by a genetic mutation. Lisbeth Tranebjaerg, Professor of Medical Genetics and Genetic Audiology, explains what is involved genetically.
Via the link below you will find articles by David Brown, Education Specialist at California Deaf-blind Services, who has focused on sensory integration and written a series of articles based largely on Jean Ayre’s research and conclusions.
Listen to personal stories
Sarah Dalton was born with CHARGE syndrome and, so far, has undergone 32 surgeries and survived three resuscitations. However, the physical challenges of living with CHARGE syndrome are overshadowed by the bullying Sarah has experienced. Hear Sarah Daltons story here.
In this publication, you will meet a range of people with CHARGE and you can read their personal stories about their lives and experiences: