AgCC & Me

A Brain with Agenesis of the Corpus Callosum

A Brain with a Normal Corpus Callosum

Agenesis of the Corpus Callosum is a rare birth defect (a congenital disorder) in which there is a complete or partial absence of the corpus callosum.The corpus callosum, the band of white matter connecting the two hemispheres in the brain, fails to develop normally, typically during pregnancy. The development of the fibers that would otherwise form the corpus callosum become longitudinally oriented within each hemisphere and form structures called Probst bundles.

Signs and symptoms of AgCC and other callosal disorders vary greatly among individuals. Some characteristics common in individuals with callosal disorders include vision impairments, low muscle tone (hypotonia), poor motor coordination, delays in motor milestones such as sitting and walking, low perception of pain, delayed toilet training, and chewing and swallowing difficulties.

Laboratory research has demonstrated that individuals with ACC have difficulty transferring more complex information from one hemisphere to the other. They also have been shown to have some cognitive disabilities (difficulty in complex problem solving) and social difficulties (missing subtle social cues), even when their Intelligence Quotient is normal. Recent research suggests that specific social difficulties may be a result of impaired face processing. The unusual social behavior in childhood is often mistaken for or misdiagnosed as Asperger syndrome or other autism spectrum disorders. Other characteristics sometimes associated with callosal disorders include seizures, spasticity, early feeding difficulties and/or gastric reflux, hearing impairments, abnormal head and facial features, and mental retardation.

So much for technicalities...

This disorder has been known about for a long time, yet is only now beginning to be researched as diagnoses requires a proper brain scan...until recently it was not an easily gotten diagnoses.  I grew up with varied social, emotional and communications difficulties, and as a result from the age of 3 began the roller coaster of multiple failed diagnoses, a failure of the educational system to continue my average expected education, decades of social maladapted behavior, shame, guilt, and all out suffering.

Many of the symptoms associated with this disorder continue to plague adults throughout there lives, albeit we do learn to adapt and some thrive regardless. There has been little if no study at all of acollosal disorders until recent years for reasons noted above.

This site will express how I investigate disorder and its deeply rooted effects of my life, how learning about has changed and continues to change my life, and what I learn about myself.  Hopefully it will benefit others out there that are dealing with this condition in themselves or a loved one.

While all of this is true you might question my choice for the title of my blog.  Its simply really...my experience is that I am a whole human being, beginning to accept that my wholeness looks different than yours, perhaps, and I strive to no longer let this disability define me solely on its own basis.  I no longer feel, consider myself or live as if I am broken.

Many are the possibilities of a life with AgCC, I'm unique, as we all are.  I want this blog, to not just accurately reflect my struggle with AgCC, nor even about my successfully (mostly) and proactively deal with it, surrounding myself with the appropriate resources...but the joy, pain, struggle and outright freedom that is my life, and so the blog accurately reflects my personality and opinions.  I'll no longer apologize for who I am, rather I will celebrate it in gratefulness.

I am also diagnosed with Autism Spectrum Disorder.  It is another of my major goals in life to be instrumental in educating others about that, certainly, but also to bring the same kind of awareness and light to AgCC.  The autism community is doing an awesome job, and I feel can be a template for those of us with ACC as well...we are definitely not there yet, the clinical research and help into AgCC is relatively new compared to autism.

I hope my blog is blessing to many,

Peace Out,
~Joseph Galbraith