My name is Gemma, I’m 18 years old and I don’t have a whole corpus callosum. I found out that I had partial agenesis of the corpus callosum just over a year ago after getting an MRI for a suspected problem in relation to my optic discs. Upon getting the results of this MRI, it turned out that while there was no danger with the optic discs, I didn’t have a complete corpus callosum.

When I found out about missing this part of my brain, I originally didn’t know how to feel. All of my specialists seemed to think there was nothing wrong with the agenesis as long as the absence wasn’t causing seizures. This (on top of my being halfway through Year 12 and needing to focus on my studies) meant that I didn’t take very much time to look into the specifics of partial agenesis of the corpus callosum and all I knew up until the AusDoCC Connections 2019 conference was that I had been born with this condition and that there was no way of changing that fact.

My favourite general aspect of the conference in Perth was the overwhelming feeling of belonging. I had finally found a community of people who are like me, understand me and who I understand as well. One of the main things I learned during the Connections 2019 conference was that having ACC wasn’t just a positive or negative thing, but a mix of the two. While there are many positive aspects, there are also just as many – if not more – negative aspects that come with ACC. Being told to embrace the positives while learning that the negatives were OK to acknowledge as well was really empowering. I have almost always been told to move past anything negative and be optimistic about my life, so knowing that I wasn’t the only one feeling and experiencing certain negativities was extremely reassuring. Knowing that on top of this, I was also not alone in being told this repetitive statement of focusing on the sunshine rather than the storm clouds was extra reaffirming and one of the top uplifting things I took home with me after Connections.

Being able to meet other adults affected by ACC was one of the major factors that went into me loving the conference. Finding out that I had partial agenesis of the corpus callosum originally felt very isolating, as all information about the corpus callosum and disorders to do with its absence were completely new to me. Part of this was due to the fact that I had never met or heard of anyone with ACC, and not knowing anyone who was affected by this led to feeling that I was the only one with pACC, even though I knew that rationally this couldn’t be the case. So, meeting adults who also have agenesis of the corpus callosum relieved that loneliness and gave me a very strong feeling of community. Not only was I not alone, but there were so many people and specifically adults who had similar issues that I did in their daily lives to this day, as well as when they were growing up.