Living Life Through My Eyes: My Journey with XLRS

By Cory Powers

Hi, my name is Cory, and I’m 27 years old.

I was born with a rare genetic eye disease called X-linked retinoschisis (XLRS), a condition that primarily affects males. It’s something I’ve lived with my entire life. There isn’t a cure, and every day brings new challenges, but I’ve learned that life isn’t about what you can’t do—it’s about making the most of what you can.

For most people, reading a menu, watching TV, cooking dinner, or running errands are simple, everyday tasks. For me, they often take extra time, extra effort, and a lot of patience. Some days my vision is better than others, and some days it’s a real struggle just to focus on what’s in front of me.

Living with XLRS also means dealing with frequent headaches, especially when I’m out in the bright sun. Even something as simple as spending time outside can leave me exhausted. But despite that, I refuse to let my condition stop me from doing the things I love.

I enjoy hunting, fishing, going to fairs, and spending time outdoors. Sure, there are moments when my vision makes those activities harder than they should be, but those moments make me appreciate every successful trip, every fish I catch, every hunt, and every memory I make with family and friends.

One of the hardest parts of living with XLRS is not being able to drive. Living out in the country, transportation isn’t something you can take for granted. Every doctor’s appointment, trip to town, grocery run, or visit with friends requires planning and depending on someone else. Losing that independence can be frustrating, but I’ve learned to adapt and keep moving forward.

There are days when I get discouraged. There are moments when I wish I could see the world the way everyone else does. But I’ve realized that focusing on what I’ve lost only takes away from what I still have.

XLRS may affect my eyesight, but it doesn’t define who I am.

I’m someone who loves the outdoors, enjoys spending time with family, believes in working hard, and refuses to let a diagnosis determine how I live my life. I choose to keep pushing forward, even when life isn’t easy.

If my story can help even one person understand what it’s like to live with a rare eye disease—or remind someone else facing their own struggles that they’re not alone—then sharing it is worth it.

Life with XLRS isn’t easy. It never has been.

But every day I wake up, I choose to live my life to the fullest, appreciate the things I can do, and never stop chasing the life I want to live.

To follow Cory’s journey with XLRS, check him out on Facebook and TikTok.