June Is Apert Syndrome Awareness Month

Everyone knows that February is Black History Month or September is National Hispanic Heritage Month. There’s also National Breast Cancer Awareness Month in October and, in June, observances like Alzheimer's and Brain Awareness Month and PTSD Awareness Month. But, did you know that June is also recognized as Apert Syndrome Awareness Month? Not many people do.

Apert syndrome has always been a big part of my life. And now, I’ve considered it part of my identity. It’s been with me since I was born and it’s had an effect on most of the choices that had come in my life (some of which were already decided on for me). It’s 22 years of my life (and counting) and it’s come with different emotions and factors.

Empathy, Hope, Trepidation, Sadness, Loneliness, Love, Support, Faith, Friendship, Family, and Acceptance.

I Empathize with others who have this or similar disorders. I also feel with anyone who is going through some sort of battle whatever it may be. I may not know exactly what it can be like, but I can empathize.

Hope had always got me going every time I had to go through another surgery. I hoped I would come out of it better and everything would be okay for that time. But now, I hope for more. I hope that other families will be able to persevere through their countless trips to the hospital, I hope that they have the same strong help and care that I did...and I hope that my offspring will not be part of the 50% demographic of the disorder having it passed down to them.

Trepidation came in two separate forms. I feared every time I had to get pushed into the operating room. It was a scary place especially if you were a young kid and you barely had a sense of what was going on around you. I also feared facing school because I knew everyone would look at me because I had a different face. There were many times I overheard people asking why does my face look like that or why do my hands look really small. And that led to feeling...

Sadness and loneliness. I didn’t have that many friends growing up. There were a couple, but we just didn’t develop a strong closeness. And the ones who I did feel close to were either older or younger than me so I didn’t see them much at school. It was a lonely experience. We were all just kids, we didn’t know and understand and I couldn’t blame my classmates for that. But that’s okay, because now I can safely say I got...

Love, support, and faith from my family and friends. I’m pleased and fortunate enough to find a loving and strong support system in my friendships. Through the good and the bad, they’ve all been there and given me the comfort and assurance I needed that they’ll stay. Without them or my family helping me, making sure I was properly taken care of, I don’t think I would’ve found the encouragement to keep going and finish off the surgeries.

Twelve years ago, I was still bitter about my conditon. Now I’ve managed to fully accept it. It took a long time, a childhood of tears and complaining about why do I have to go to another hospital trip. But I learned that this is who I am. I can’t escape it no matter if some days I want to.

Now I’ve been able to share my story through my writings and let others know more about this disorder. It’s pretty daunting to first open up to the public through words, without knowing who could actually see it, but over time, I grew comfortable with it. I can only hope that my voice gets heard and I and others can spread more awareness so Apert Syndrome Awareness Month will be just as acknowledged as any other awareness month.

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