Tuesday, November 11, 2014

ACC, an Orphan Disorder

ACC can clearly be labeled an Orphan Disorder.  This means it is a disorder that has not been adopted by the medical industrial complex because it provides little financial incentive for the private sector to make and market new treatments to treat or prevent it. An orphan disorder may be a rare disorder (according to US criteria, a disease that affects fewer than 200,000 people) or a common disorder that has been ignored because it is far more prevalent in developing countries than in the developed world.

The oddball thing about this is that ACC is actually one of the most common brain malformations, affecting approximately 1 in 4,000 births.  As many of us go undiagnosed for a plethora of reasons, far too many born with ACC fall though the cracks, ending up misdiagnosed, or worse in prisons and detention, hospitals and the like.  While true owing to the fact that ACC is a spectrum disorder, many with it function relatively normal throughout there lives without knowing of their condition, studies are beginning to reveal that all children born with ACC have specific cognitive differences in how their brains function.

Also being ASD I benefit from science, from services that are clustered around that disorder, yet in the ACC community this is only recently coming together.  We have not benefited from the same kind of publicity that the autism community takes for granted.  Autism seems to effect far more people in the population than ACC, but there is a correlation between collosul disorders of all kinds and ASD.  This doesn't necessarily speak to a "cause" for autism, rather that these two disorders are closely related in ways we do not yet understand.

I am constantly thinking about ways in which we can educate and make public the prevalence of ACC and it's effects on those who have it.  I'm unsure as to how the autism community began this journey, but I am convinced that it can serve as a model for us.  We already have such great organizations as the NODCC, the National Organization for Disorders of the Corpus Callosum that are doing great work bringing together those of us affected by ACC, but so far they really lack the funding to educate on the scale of the autism community.  The NODCC holds conferences for parents of ACCers and adults affected with the disorder.

I have not yet been able to attend a conference, but it is one of my life goals.  I have lived below the poverty line for most of my adult life, and even putting together the money for airfare and for the conference is (so far) completely beyond my means.  This is a source of great frustration and sadness for me, as I hear of the great connections and networking many with ACC are making at these conferences, and the positive effect it has on their lives.

I do have the pleasure of belonging to a few online support groups, and I personally know one other adult with ACC that lives in my region, albeit too far away to visit.  The support groups are great, but I'm convinced nothing equals the face to face in person connection that these conferences can provide.

I'm hoping the right people can put there heads together, and discover ways that we can educate the population at large about ACC, can help organizations such as the NODCC education, inform and and assist others that so far have been unreachable.

What we really need is for our cause to be picked up by the media.  I've been, myself, brainstorming about how this might actually look and I have a few ideas, but I lack the connections and the personal ability to carry my ideas out.  I actually used to know several people in the media, but have long since lost any connection to them.  Would I have known of my condition years earlier I would have taken advantage of these resources.

We need to get the word out!  We need the same kind of notoriety as seen in the autism community.  How do we do this?

Inquiring minds want to know.

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