Where are you from?
San Diego, California
Where do you live now?
Tempe, Arizona
Tell me about yourself:
I am currently a Junior at Arizona State University, studying to get my Bachelor of Science in Justice Studies with a minor in Fashion and a certificate in Disability Studies! I hope to tie my degree combination into one, aiming to bring diversity, equity, and inclusion to the fashion industry. I have a passion for public speaking, animal justice, and expressing individuality within fashion. I have a large place in my heart for people and their stories, wanting every individual I come across to feel as though they are being seen, heard, and understood.
What's your EYE story?
“One in a million”, they always say. Well, for me, that truly is the case. I have an extremely rare genetic disorder known as Oculofaciocardiodental or OFCD for short. This condition only appears in less than 1 in 1 million females alone, which is where I get to brag about being one in a million. While this condition affects the eyes, heart, mouth, and face, one of the most ongoing areas for my medical journey has been the ocular component. I was born with congenital bilateral cataracts, having my first surgery to remove them at just 4 weeks old. While it succeeded in my left eye, the cataract removal surgery failed in my right, causing the eye to stop growing as it should have, creating the appearance of a lazy eye. After a number of surgeries were done with the hopes of salvaging the vision in that eye, doctors eventually declared that my right eye would in fact not be salvageable. I ended up having near-twenty eye surgeries all before the time my little self could even be turned a year old. At around 18 months old, doctors brought up the suggestion of wearing a prosthetic over that right eye for protection and cosmetic reasons. I got fitted for my first prosthesis at 18 months old, and have had close to 10 prosthetics since then. Soon after I got my OFCD diagnosis at 9 years old, doctors noticed the pressures in my eyes had been significantly increasing, indicating I had Glaucoma. Months after I started my freshman year of high school, I had to get a near-emergency surgery to alleviate the pressure in my only seeing eye. Since then, my pressure has drastically improved, and I have only received a lid surgery to repair the exposure the Ahmed drain surgery had caused. Within the past 2 years, I have come to accept how I look without a prosthetic eye and have been going without one ever since.
What has been the most challenging thing mentally?
The hardest thing for me mentally has been the endless hurdle of accepting that I’m different from others. While, of course, every individual is different, diversity hasn’t always been accepted, welcomed, and included in society. I have had to endure a lifetime of stares, remarks, questions, and comments, all due to something I have absolutely no control over. Something I have realized is that even on the days I am able to love myself and my differences, I often end up feeling set back or let down because of a stare or a comment I receive. Receiving stares because of your appearance is not an easy concept to become accustomed to. Through my experiences I have learned that as everyone has scars, I visibly wear mine for the world to see, allowing my story to tell itself to the world and to the people around me. While it’s a frustrating situation to be constantly reminded of my disability even when I’ve come to a season of acceptance, I’ve come to use it as an opportunity to share my story and to provide education to those around me, who may not have experience with certain disabilities or differences.
What has been the most challenging thing physically?
My greatest difficulty was having to adapt to learning the world around me as a baby. From needing to physically sit down and scoot, to go from one surface to another, to needing a variety of materials to help me learn colors, and textures, and adapt to the limited depth perception to which I have. As far as physical obstacles in my current day life, I often face difficulties seeing well at night and have taken a step back from driving until I find a vehicle/city I feel comfortable and safe driving in again (a college town is not the easiest for one-eyed drivers).
Where are you now in your recovery?
As of right now, my eye pressure is stable in my left eye and I only need to visit a Glaucoma specialist every 4-6 months. Because my actual lens was removed from my good eye, I have a very high-powered, custom-made hard contact lens with a slight glasses prescription for additional help. I have been incredibly fortunate to receive a handful of help from my college to offer me support throughout my studies. While future surgeries will be needed to help maintain the stability I am currently in, I am unbelievably grateful for the endless support from my family, friends, and doctors I have met throughout my medical journey.