About Corpus Callosum Disorders (CCD)
People with a congenital corpus callosum disorder (CCD) are born missing all or part of their corpus callosum, the largest white matter structure in the brain. The corpus callosum is made up of more than 200 million nerve fibres and enables communication between the two sides of the brain. It is sometimes described as a bridge or superhighway allowing fast connections between the the hemispheres.
A CCD occurs when the corpus callosum doesn’t form in the usual way. It is diagnosed by MRI or CT scan with four typical presentations:
- Complete agenesis – the corpus callosum did not form at all
- Partial agenesis – only partly formed, anything from small to most of it
- Hypoplasia – the corpus callosum is thinner than usual
- Hyperplasia – the corpus callosum is thicker than usual
CCDs occur in 1:4000 live births, which classifies them as a rare disease. The cause may be genetic or something in the environment during pregnancy, for example, a viral infection or exposure to toxins such as alcohol. Sometimes there is no apparent reason. There are more than 350 known genetic causes with scientific research discovering more each year.
CCDs are extremely heterogeneous and can cause cognitive, physical and psychological impacts ranging from mild to severe. There are many associated conditions, for example, intellectual disability, autism, ADHD, OCD, epilepsy and cerebral palsy. Research by Brown and Paul (2019) describes the core impacts as: (1) reduced interhemispheric transfer of sensory-motor information; (2) reduced cognitive processing speed; and (3) deficits in complex reasoning and novel problem-solving.
Although there is a growing body of biomedical research about the cause and presentations of CCDs, very little is known about the lives of adults diagnosed with a CCD. This research project, A Good Life, aims to work collaboratively with the community of adults with a CCD to understand how they perceive their quality of life and how best to communicate their lived experiences to improve supports for their personal wellbeing.
Click here to read a research report about the lives of adults with a Corpus Callosum disorder.
Click here to read a review of published literature about the cognitive and psychological impacts of CCD on adults.
