Meet Ash Arellanes, digital content creator and advocate for individuals with keratoconus, from Waynesville, Missouri. She shares her experience with keratoconus and how she’s navigated life since her diagnosis.
The first time I put a scleral lens onto my eye, it was an eye opening experience – literally! Before that moment I had spent the last two years with diminishing vision, and at this particular appointment I was told I had a visual acuity of hand motion. For years I knew something was wrong with my vision, but after two doctors telling me my glasses didn’t work because “I didn’t wear them” and I couldn’t see in the dark because “no one can” I had believed my vision loss was just made-up due to anxiety… Little did I know, I had keratoconus.
For years, every face I tried to picture was a blur, a water color of mishmash where features should be. No one could have prepared me for the sensory overload and panic I felt the first time I saw a face again, or the nausea I felt as I took in my surroundings. It felt like every detail around me demanded attention. I spent the first 30 seconds crying and asking to take the lenses out. That fear quickly replaced with laughter as I saw my own reflection and how badly I needed a face wash! The staff laughed and cried with me. After the appointment, I refused to sit at home that day. Keratoconus had taken so much from me in two years, the world felt brand new and I wanted to get to know her again; I wanted to see everything. Of all the sights I saw that day, the most striking view of all was the moment I saw my daughter’s face for the first time at 9 months old. Her smile brought me so much joy, but with that came a twinge of sadness of all I had missed even though I had been there all along.
I was diagnosed with keratoconus six years ago and during this time KC was a whisper in the lives of many yet a shout in mine. No one was talking about it. Why had I never heard of it? I wanted to talk about KC, I wanted to find someone I could relate to. I took it upon myself to start the conversation. TikTok became my stage, a place where I could share, connect, and empower others. It was uncharted territory, but my message was clear: You are not alone.
My community grew with people from all walks of life, each thread woven together by a shared experience or a desire to learn. The content I share on TikTok and Instagram Reels is a mix of humor and heart to educate and bring the keratoconus community together. Together we have created a space where awareness isn’t just about visibility, but also about understanding and support. I have found my passion in educating others about KC and scleral lenses. I am currently working on a non-profit to provide financial assistance to those needing specialty lenses and related procedures. This community needs more.
Looking ahead, I see a world where no one with keratoconus has to feel their way in the dark. I envision a community that continues to grow, to educate, and to advocate for every person affected by KC.
And to those just starting their journey, your vision may change, but your ability to dream remains limitless. Don’t give up. I know it’s hard, but we can do hard things.