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You are here: Home --> Forum Home --> General Forum --> Spamvertize --> Agenesis of the Corpus Callosum
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Bromern Sal
A Shadow
RDI Staff
Karma: 145/11
3911 Posts


Agenesis of the Corpus Callosum

Nope! That's not a foreign language...kinda. Well, I guess it's Latin if you want to get technical, but hey! It means something. More precisely it means that the corpus callosum (the membrane that connects the two hemispheres of the brain and allows them to communicate) never developed. Why do I bring this up? Because my youngest son was diagnosed with ACC at birth, and we just found out a couple of years ago when his development was off pace.

Now, why am I posting this here? Because I'm trying to develop a greater awareness for the disorder. You see, our family doctor didn't tell us about the diagnosis because he didn't know what it was and hadn't heard of it being detrimental to anyone so he felt we needn't worry about it. Problem is, it is relatively new in the industry of psychology and brain abnormalities, so not many people know what it is. As a matter-of-fact, we're still fighting his school to get him certain educational aids and resources reserved for people with recognized disorders. We didn't feel that there was any support for it really until we stumbled across the NODCC (National Organization for Disorders of the Corpus Callosum) and the conference they hold once a year.

That put us in New Jersey last year and really opened my eyes to the problems people with ACC, or those supporting people with ACC, faced. So, I've developed a site, and am hoping that its community will grow to further support the education of people about ACC.

Now, while this site is dedicated primarily to ACC, it is also in place to support all disorders of the corpus callosum, so if you know anyone with a disorder, or feel that you'd like to participate, feel free to visit!

www.dccutah.info


Posted on 2008-10-24 at 02:36:19.

Brianna
Not Dragon Mistress
Karma: 105/32
2282 Posts


Hmmm,....

While, I do not have that disorder, I think , believe, wonder if I do have a disorder, only mine it isn't named yet

Okay I am just being funny.

Turly, it is good you have made a site that others with the problem or knowing people with the broblem can find needed information. I wish for the best for you new endevor.


Posted on 2008-10-24 at 02:48:04.

Eol Fefalas
Keeper of the Kazari
RDI Staff
Karma: 453/28
7605 Posts


Wow...

...what with my wife having the job she does, I figured that I'd heard of quite a few disorders and such (even outside the almost standard (in this day and age, it seems, anyway) ADD, ADHD, Autism, etc... got to admit that ACC is one I hadn't heard of before, at all.

Thanks for sharing, Brom... awareness and knowledge, after all, is always the first step on the path in most cases... and kudos for the dedication and creation of the site which should help spread some of that awareness/knowledge) to the rest of us.


Posted on 2008-10-24 at 11:23:46.

Lady Dark
Resident
Karma: 39/2
285 Posts


More resources

I encourage you to link up with the National Order of Rare Diseases. NORD has a wealth of information they will readily send you on the condition, as they did when my sister was diagnosed.


Posted on 2011-08-28 at 04:37:35.

   
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