Sunday, August 17, 2014

'Orphan diseases/disorders' and ACC

I find it alarming, as do many of us with ACC that there are so many of us, and yet we don't get the media or public coverage that autism does.  After my Autism Spectrum Disorder diagnoses, I've gotten a taste of the many groups out there advocating for ASD.  To date there are only a few organizations devoted to disorders of the corpus callosum.

The one I have mentioned before, was very helpful to me in the early days of my ACC diagnoses, the NODCC or National Organization for Disorders of the Corpus Callosum.  There goal is to educate parents of, and adults with colosul disorders, raise funding for DCC research and testing and awareness.  Every two years the NODCC sponsors a conference.  I've not had the money to able to attend one yet, but I await the day that I can be in a room with hundreds of people with ACC!  I am also ever grateful to  my good friend and soulmate who passed last October for encouraging me to learn about my disability, and further, to reach out of myself and help others like I am doing with this blog...I owe that all to her.

Even with the state of things media and public, there has arisen a few support groups, both on the web, email, and Facebook, of which I take part in. I honestly don't think I would have survived this long without them.

Even today, trying to find someone to advocate for me remains difficult.  There is the Autistic Self Advocacy Network that I have learned so very much from, but there are difficulties specific to ACC that we need an "ACC Self Advocacy Network."  I've learned much from my friend Sara Oliver, born with PACC about self advocacy, but the learning comes slowly indeed.  Those of you in our ACC community that are reading this, we need to begin to organize in such a way that we can advocate for ourselves and each other.  I feel we need to begin this discussion now.  There is a "mixup/mashup" between many symptoms of ACC and ASD, and so many children and adults do not get proper diagnoses until later in life, and this really saddens me.  

I know myself, had I been given proper early intervention my outcome would have been different.  There is so much that can be done in the early formative years that becomes largely fixed after adolescence, let alone childhood.  It gives me great joy to see parents of PACC and CACC children actively involved in bettering their child's life, in learning what makes an ACC person "tick," and discovering our strengths and bolstering our weaknesses.

Let the discussion begin!


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