Kat’s Kourage
— Kathryn Blalock

Growing up with Bardet-Biedl syndrome, I needed accommodations, extra support, and sometimes a little more patience than other students required. But when I look back on my school years, what stands out most are not the tools I used or the things that were difficult. What stands out most…

Before I knew or understood anything about Bardet-Biedl syndrome (BBS), I was just a little girl living life. I was born with 12 fingers and 12 toes, enlarged kidneys, and high blood pressure. As a toddler, I began expressing that I couldn’t see in the dark and showing some…

Attending Oklahoma State University (OSU) had been a dream of mine for as long as I can remember. I didn’t want to go anywhere else. So when I finally moved into the dorms at Stillwater in August 2013, it was a dream come true. I was on my own for…

Technology plays a huge role in my independence as someone who is mostly blind. My iPhone is one of the accessibility tools I rely on every day. The examples of how I use my phone as an accessibility tool are endless. I use it to tell the time, keep track…

Football season is my favorite time of year. There’s nothing quite like the excitement of game day. I’ve been attending football games since I was a little girl. Back in the day, before my vision drastically worsened, I could see the ball and tell where the players were on the…

Before I underwent treatment, living with Bardet-Biedl syndrome and obsessive-compulsive disorder (OCD) often felt like a double whammy. While vision loss affected how I navigated the world around me, OCD influenced how I experienced it. Blindness often exacerbated my OCD because I couldn’t always see what was around…

Grief can show up in many different ways. It can come from losing a loved one or a beloved pet, or grieving a part of your life that is slowly changing. For me, grief has been part of living with progressive vision loss. I grieve parts of my independence, experiences…

It’d been well over a decade since I last attended a Bardet-Biedl syndrome (BBS) conference. Back then, I was a young girl who wasn’t ready to accept my diagnosis or disability. Fast-forward all these years, and I returned ready to embrace who I am and in a position to use…

For a long time, I never imagined that my story could help someone else. I spent years feeling embarrassed by my blindness, ashamed of my obsessive-compulsive disorder (OCD), and hesitant to talk about the challenges of living with Bardet-Biedl syndrome (BBS). Instead of allowing people to see those parts…