DCC is a condition present at birth in which the Corpus Callosum is either completely or partially absent, or is malformed. The Corpus Callosum develops between the 5th and 16th week of pregnancy.

Affected individuals may experience a range of cognitive, psychological, physical, or behavioral challenges, from mild to severe. These can include developmental delays, difficulties with social interaction, learning disabilities, and deficits in processing and executive function. There may also be challenges with complex thought, language skills, and speech. Co-occurring neurological and genetic conditions can also be present, such as autism, epilepsy, or Aicardi syndrome. These effects can be obvious or they can be hidden, which means that accessing necessary help, understanding, and support can be difficult.

• DCC i.e. Disorders of the Corpus Callosum (umbrella term)
• AgCC i.e. Agenesis of the Corpus Callosum, meaning the partial or complete absence of the Corpus Callosum
• Hypoplasia / Hypogenesis meaning a Thin Corpus Callosum
• Dysgenesis meaning a malformed Corpus Callosum

The development of the Corpus Callosum was incomplete

Other conditions that may present with Disorders of the Corpus Callosum:

• Epilepsy
• Developmental delay
• Vision and/or hearing impairment
• Autism Spectrum Disorder (ASD)
• Cerebral Palsy (CP) with issues in muscle tone

Associated brain abnormalities may include:

• Colpocephaly (Enlargement of the lateral ventricles, where fluid builds up in the space normally occupied by the Corpus Callosum.)

• Hydrocephalus (Increased pressure within the ventricles caused by an obstruction of fluid flow.)
• Microcephaly (An abnormally small brain.)
• Malformed cortex (An abnormality in the structure or folding of the brain.)
• Abnormalities of the cerebellum or brainstem
• Abnormalities of the pituitary gland

How is it diagnosed?

DCC can be diagnosed during pregnancy using an ultrasound and can be confirmed with a fetal MRI. It can also be diagnosed later in life with a CT scan or MRI.

What causes DCC?

It is difficult to determine the cause of DCC. It may be caused by a genetic disorder (an abnormality in chromosome structure or in the genes themselves) or by non-genetic factors, such as toxic or infectious exposures during pregnancy. Often, the cause of DCC cannot be identified, even with currently available testing. Research to identify these causes is actively ongoing. Developmental outcomes can vary significantly, ranging from normal development or mild impairment to severe cognitive and physical disabilities. An early prognosis is difficult, as challenges may or may not become apparent as a child develops. A 'wait and see' approach is common among medical professionals.

Some common characteristics that may be present:

• Delayed development in motor skills, speech, and cognition.

• Challenges with sensory processing.
• Language disorders affecting speech.
• High pain threshold.
• Sleep problems / disturbances.
• Difficulty regulating body temperature.
• Limited insight into one's own behavior and its consequences.
• Difficulty with complex tasks, such as finding the right words in social situations, problem-solving, and abstract reasoning.
• Challenges with social interaction. This can include being unaware of the thoughts and feelings of others, misinterpreting social cues (like facial expressions and tone of voice), difficulty with empathy, a limited understanding or use of humor, and an inability to follow the conversations and actions of peers. These challenges often become more apparent during early adolescence.

Potential Strengths:

A high pain threshold and, for some, the ability to focus on multiple things at once.

DCC is a hidden disability, which can make it very difficult to access diagnosis, help, and support. Individuals with AgCC may have deficits in executive function, socialization, and higher-order reasoning, even if they show no difficulty with simple tasks like making their bed. Affected individuals can benefit from cognitive and behavioral therapies that focus on their specific challenges. They often perform better when given more time to complete tasks.

Please excuse any phrasing or spelling errors. As someone who is personally affected by this condition, I try my very best, but this is an area of difficulty for me.

This text was adapted from brochures created by the Australian Disorders of the Corpus Callosum organization (AusDoCC).

Umbrella Organizations and Networks We Belong To:

ÉFÉOSZ (The Hungarian Association for Persons with Intellectual Disability) does not accept organizations as members; instead, they welcome individuals. For a minimal fee, and upon submission of medical documentation, members receive a card that provides access to numerous discounts

RIROSZ - National Federation of People with Rare and Congenital Diseases

EURORDIS - The European umbrella organization for rare diseases

ITHACA ERN - European Reference Network for Rare Malformation Syndromes and Rare Intellectual and Other Neurodevelopmental Disorders

Hungarian Chamber of Patient