Adult Spotlight: Tyler Nienas

“Is Tyler okay?" my teacher asked. "He looks like he got punched.”

Those words from my fourth-grade teacher to my Mom changed my life forever. It was because of her concern that my mother scheduled a doctor’s appointment which led to a diagnosis of Fibrosis Dysplasia on the left side of my face. At ten years old I didn’t really care or know of the impact this diagnosis would have on my life. 

There have been the obvious downs of living with a rare craniofacial disease. The teasing throughout

middle school was brutal. I would constantly be asked, "what happened to my face?" "Why is your face so puffy?" I would be called ugly, deformed, gross, and burn victim just to name a few choice words. While these actions and words carved a huge blow to my self-esteem, I thought there would be some solace in my first surgery, which I had right as I was starting high school. I thought finally my face will be “normal” now. It was December 20, 2006. The surgery was performed in St. Louis. I was fourteen. I remember waking up in tremendous pain and disorientation. I have had over a dozen surgeries since then, some in St. Louis others in Dallas, TX. All these surgeries were related to my Fibrosis Dysplasia.

There have been nights where I have cried myself to sleep because I felt ugly and isolated, like no one else could understand what I've been going through. I became shut off from the world. And to be honest, I have been there and I have hit rock bottom more than once.

However, you cannot let your disease define who you are. Adversity does not define you. You define your direction and purpose in life. I had great support from my friends, therapists and most importantly my family that helped me cope with the struggles of Fibrosis Dysplasia. There are more people in your corner than you realize. It took me a long time to accept my disease and come to grips with it. I became a better person because of it

Now, I am a 26-year-old man living and working in St. Louis, Missouri. I can truly say I am blessed to have this happen to me. It has given a new vigor to my life. It has made me appreciative of what I have. It has taught me that life is meant to be lived. Beauty is skin deep. It is the impact of your actions and how you treat others, no matter their physical appearance, that will ultimately be what people remember about you. It is that attitude and mindset that has made me able to share my story with others. I encourage all of you to share your struggles, your pain, but most importantly your victories because those happen daily. The victories happen when you choose to live your life and look beyond the realm of physical appearance, and into the world of supernatural courage and determination. 

If you are living with a craniofacial disease, whether you are a parent or patient, know that I and everyone here at the CCA is in your corner and rooting for you always!